“Well, you’re still here! You’re still alive!” one of my Drs said optimistically just last week.

“Wow, what a journey!” “What a rollercoaster!” I’ve also heard from many in my life, as well as some more ‘colourful’ descriptions of my health situation in recent times too!  

I’m so grateful to still be here and so thankful for the prayers from near and far, the amazing practical help and the incredible encouragement from many along the way as I continue to navigate all of this!

The nature of chronic illness and dynamic disability is it’s constantly changing, and you never really know what complication or curveball is coming next and how much life can change in a single scan or a single step!

So as I (very carefully) step into 2025, here are a few things I’ve been pondering in 2024…

1. PRAYER

I have felt so supported and covered in prayer the whole journey so if you’re one of those people who has been praying for me – THANK YOU SO MUCH! I really appreciate you!

I was actually originally hesitant to share much about what was happening as I was concerned I may stress others out but I was surprised at how much others cared and the ripple effect of family and friends praying for me both here and overseas with their own communities – it was incredibly humbling and very appreciated! Thank you!

Through the highs, lows and rollercoaster of a year, many prayers were answered as I trusted in the timing of things and saw so many answered prayers along the way.

Some of the bigger ones –

• The best one – after a long time coming I’m so grateful to have started ongoing immunotherapy treatment (IVIG) earlier this year for the myositis (very rare muscle disease) and my heart and have in recent months had two very promising results! Big answer to prayer!! I have this treatment every four weeks.
• The original ‘most likely’ mastectomy surgery etc was downgraded to a lumpectomy/excisional biopsy surgery as what they originally thought was breast cancer due to a number of tests and in the surgeon’s words ‘extensive family history’ was actually a rare condition called PASH, sometimes mistaken for cancer. The original MRI was 2 Jan where they found a suspicious large ‘alien’ looking lesion (4.5 x 4.2 x 2.5cm) and due to a number of unfortunate events and delays, I didn’t get the official all clear until 31 APRIL!!! I’m now under ongoing annual MRI surveillance with next review in Jan 2025.
• Surgery was postponed a number of times and six days before one of the proposed surgery dates I was walking normally at home and heard a loud, “CRACK!” – turns out I broke my foot! (thanks osteopenia!) The healing of my foot took its sweet time, but prayers were answered when it finally healed without the need of surgery for that too. Due to the slow healing the original 6 weeks non-weightbearing turned into 4.5 months unable to walk or drive, primarily in a wheelchair in which I couldn’t propel myself for long (things are extra complicated when you also have a muscle disease!) though I can see the whole situation was a blessing in disguise for my heart – both physically and emotionally.

I’ve kept a prayer journal the past couple of years and it’s amazing reading back through and seeing how prayers have been answered – sometimes not in the ways I expect! My prayer journal contains ‘I’m thankful for, I’m worried about and I’m praying for’ sections and I find it really helps to write down my prayers and then let it go. I don’t tend to worry about things when I do this.

A few months ago as I was cleaning out my bedside table and came across a wristband my son had chosen for me at the Mother’s Day stall. I didn’t realise what it said when he’d given it to me but was a very timely reminder when I came across it later – “Always pray and never give up!”

2. PEACE & PROMISES 

Despite there being some pretty big emotions along the way, I never actually felt afraid or fearful and throughout my journey I have had this unexplainable peace through all the storms that have come.

A few years ago I was talking with a friend who also has some significant health challenges and we both described how we felt like we were ‘drowning’.

That night as I was pondering our conversation, a chapter from one of my Aunty’s books came to mind where she shared an analogy about a swimming experience she had when she was younger, then described how God is like our lifesaver. As I flicked through the chapter, Psalm 18:16 spoke right to my heart, “He reached down from heaven and rescued me. He drew me out of deep waters”. Wow! What a promise!

I thought back to lifesaving practice in primary school when the lifesaver approached us, we were instructed to turn on our back and float as they pulled us to safety. In that position we didn’t know what waves were ahead, all we had to do was trust the lifesaver to keep us afloat and keep on kicking.

This is a promise I have held onto over the years through of all sorts of storms and waves, and a few that have felt like tsunamis leaving destruction and debris for a long time after! Through it all I have held onto my peace and trusted the lifesaver even though I have no idea where we’re headed. It’s probably not a bad thing that I didn’t know what was ahead!

As a tangible reminder, I have carried around a Seed Stone which has encouraged me in many situations over the past few years – through many infusions, tests, appointments and surgery. It has the words ‘Relax’ on the front and on the back, “Let the peace of God rule in your heart! Colossians 3:15”.

Following my peace in terms of finding the right Specialists and treatments has been very important also (more about this at a later date – that’s a whole journey in itself!).

Music is also something that helps me keep my peace. Two of the many songs have encouraged me through this time, ‘Peace Be Still’ by The Belonging Co & Lauren Daigle and ‘My God Can’ by Katy Nichole – reminding me that I may not be able to change my circumstances, yet I can still have peace in the storms. One of my close friends thoughtfully put some of the lyrics on a beautiful journal for me which has been a great reminder through it all.

3. PEOPLE 

As I reflect on this year I just think of all the wonderful people in my life! Funnily enough despite being so disconnected from everything for a big chunk of the year, I have still seemed to connect with many – often on a much deeper level and have even have some new friendships develop in my life in this time.

There have also been those – right place, right time moments like the friend who was working the night I broke my foot. She came to see me on her break, and we just sat there and laughed at the ridiculousness of the whole situation, which made the night so much better!

Then there’s those familiar faces you see around the place that also make a huge difference, like the old friend of my husband who works at the hospital who is a consistent familiar friendly face every time I go there, or the lovely lady who works at my local cafe who I shared a bit of my journey with and now she asks how I am doing each day I’m there – it really means a lot! All these little things make a huge difference when you’re living this 24/7. 

I can’t begin to describe how much I appreciate the thoughtfulness of many throughout this time! Phone calls, messages, timely encouraging cards, people checking in to see how appointments or tests went, home visits, the thoughtful surprise care packages at my door, flowers, meals or even just stopping by to drop in a takeaway drink. When you’re stuck at home these little things are big things and being thought of means so much. Even seeing someone for 5 mins can totally make your day and encourage you to keep going!

Whenever I write in one of my beautiful journals, use one of my lovely mugs or drink my special teas (you all know me well hehe), I still think of each person and how thankful I am for their friendship! When I had the capacity in the later months post-surgery, some lovely friends picked me up for coffees and we even had a few fun shopping adventures!

Chronic illness life is something no one would ever choose. I would definitely rather be doing other things with my time and life. Much of this alternate reality is often invisible, misunderstood and can feel very isolating – both physically and emotionally, so it was in some ways nice having others join me in my world for a short time, accompanying me to appointments and treatments or just extra chat time in the car going places. I also appreciate the family and friends in my life who know this is ongoing and isn’t over – so I appreciate their continual support and encouragement through it all, as well as all the various other aspects of life! Love doing life together!

It’s been a real journey in finding the right Specialists and Drs but I have some great ones now, all who give great insights and encouragement at times and I have other supports who I can talk to regularly which I find helpful. (Yes I do the natural approach also and have an integrative medicine Dr on my team also. It all helps!)

I’m so thankful for the family and friends who have prayed for me, who are there for me through the most uncomfortable of times, when I’ve felt so vulnerable and not at my best and who listen to my ‘real’. And those who have listened to me whinging about the fluid retention I’m still dealing with (thanks prednisone!). And most importantly, the friends and family who make me laugh especially in the tougher moments, with one friend constantly reminding with every ridiculous thing that happens, “Don’t worry – this is all just more content for your book!”

4. PRACTICAL HELP 

Through much of this year I needed to accept help and learn to ask for help. It was uncomfortable but necessary. I am so incredibly thankful for those who helped us out with school runs when my husband had to travel to the office or away for work (thanks to my friend, sis in law and parents in law), so thankful to those who made us meals and helped out with a few things around the house in the early days. So appreciated!  

‘Nurse Mum’ came to a number of appointments with me, especially preparing for surgery, was onto shopping for some button up pjs for me before I even had a surgery date!! and she looked after me post-surgery as I had a 15cm incision under my left breast and a broken right foot (plus the whole muscle disease thing), which made movement quite difficult in the beginning! Thanks to my Dad too who was working on repainting the interior of our house before I broke my foot, then fixed it up again after my not so great wheelchair driving in the house!

Throughout my journey with myositis, my capacities and abilities have changed and I’ve had to adapt over the years and this was just another season of that – learning how to do everything from a wheelchair. It was probably hardest on my husband who had to pick up a lot of the school runs and running me about to some of the appointments, all while trying to work full time in another direction!! He did well to manage it all!

It was quite interesting taking myself out of the equation at home and realising how much I do – or perhaps I was actually doing too much, not realising how capable my children actually are. Giving my children extra jobs around the house actually ended up being a huge positive. They loved helping out with age appropriate jobs and enjoyed the extra responsibility. I sat down and wrote a big list of all the chores, split them between us and stuck the list inside the pantry cupboard, so we were all clear on what needed doing. We all had specific zones and I made a little colour-coded routine and chore chart for the kids which they could tick off.

We had a few little family meetings also which my kids love. My 8 year old son would get out his Star Wars notebook and pencil and write all sorts of notes about things we needed to work on or extra chores he was responsible for. My daughter would tick off what we needed from the master grocery list. When the groceries were delivered, they would help put them in my beach trolley, wheel them to the kitchen and help put them away.

I’ll never forget the day my husband was away for work and the kids came in and asked if they could help clean the house – yes please!! They got to work on different jobs throughout the morning. As they were hanging out their own clothes out on the clothes rack, I overheard them talking excitedly, “This is such a fun day!” then the other replied, “Yeah, it’s the best day ever!”

My then 6 year old daughter was a little energiser bunny helper, thoughtfully doing things without even being asked. She would constantly refill my drink bottle or make me breakfast in the mornings. She even offered to be home schooled so she could look after me but I told her to go and have fun at school with her friends and she could help me after school if she’d like. So as soon as she’d get home, she’d grab my drink bottle to make sure it was refilled with fresh water and ask if there was anything else I needed. We also went on a few shopping adventures together while I was in my wheelchair. She was organised with a list of all we needed that she ticked off and including a stop at a cafe for a treat of course! One time she saw another child with her mum with a motorised wheelchair and turned to me wide eyed and excitedly said, “Where can we get one of THOSE!”

The kids were so resilient throughout this time and I made sure to keep the lines of communication open and check in to make sure they were doing ok with all the changes to routine and to what was happening. The hardest part was being away in hospital for days then recovery time at my parents, but they were able to Facetime, sent me messages and videos. It was best for everyone that I was away during that unpleasant first week of recovery.

God’s hand was well and truly on us. Before I even broke my foot I had a new school mum friend offer to do some school runs for me as she knew I wasn’t well. I thought it was such a kind offer but I didn’t want to inconvenience her though she kept insisting she would be more than happy to drive the kids home some days. So, when I broke my foot she happily stepped in, dropping the kids home twice a week and I really looked forward to our Fridays when she’d stay for a tea and a lovely catch up. She was (and still is) an incredible emotional support to me throughout it all. As well as the school runs, she also offered to take me to the shops if I needed, to a Mother’s Day event at the kid’s school and IVIG at the hospital which made it a whole lot more fun catching up over tea.

Another encouragement was when I returned home after a discouraging appointment one afternoon. Not having told anyone about it, God knew what I needed that day. Shortly after arriving home, a beautiful care package from the kid’s school Chaplain and school community arrived with an encouraging card and some delicious gluten and dairy free baking and meals. It was so timely and the encouragement boost I needed that day.

Another God moment was when I met a lady outside Church. She was waiting on a friend who didn’t end up showing up that particular day, so we got chatting. If I’d only known in that moment what a huge blessing, encouragement and help she would be over the next few months! At the time she offered to make us a meal so she got my number. Of course I was thinking that if she’d message I’d say thank you but we’re ok as you do, not wanting to inconvenience anyone. Though she messaged a few weeks later once I was home again post-surgery, not offering but saying “I’ve made you two meals. When would suit you for me to drop them in?” So lovely!

She didn’t just make us meals that first time, she has continued to make us many delicious gf df meals and baking over the past few months as she realises this is ongoing. It has been especially helpful during IVIG weeks and weeks when I haven’t been well tapering steroids. I’ve really enjoyed her and her husband’s visits and have since met other lovely members of her family – their children and grandchildren. Their entire family has been a huge blessing and encouragement to us in a number of ways! She has a real heart to help and most of all they have also been faithfully praying for my health, sending lovely encouraging messages and have even brought over books and activities for the kids. There are just some really lovely people out there! So thankful for them!

5. PRIORITIES & PURPOSE 

None of us know how much time we have on this earth and as much as I try to live a meaningful and purposeful life, I feel it’s not always the case. Despite all I’ve experienced over the last 20+ years, at times I still find myself getting caught up thinking about the seemingly unimportant things or just doing things for the sake of it.

Being forced to rest during this season was not only a positive physically for the physical health of my heart but it was good emotionally too. It was a good time of reflection, a good reset and refocus of what God has put on my heart to do moving forward and asking myself what is really important and what really matters in the scheme of things.

One thing that was weighing on my mind when all this was happening were my kid’s photobooks. I was so far behind on those. I had only done 0-2 years and had about 19,000 photos on my phone. So throughout the months I chipped away at those, often falling asleep on the couch but I kept working on them bit by bit. My goal was to finish them for their Christmas presents which I’m happy to say I achieved. Their books are now up to date to 7 and 8 years old and include their rhyming poems of their entire lives, artwork and a lot of photos, both ended up being about 100 pages each, so more like a little chapter book each! It’s a great feeling knowing they are done and that all those precious memories are stored away in the one place.

I’ve also been working on a few other creative ventures – some things in the chronic illness space (more on that later), some more creative projects and this blog which has been on my heart for a long time, with some encouragement and a little push from some great people in my life. Thank you!

I have since re-done my prayer and goal board. I think the last time I properly updated it was in 2021, so it was a great opportunity to reflect on what I had on there previously, my growth as a person (many of them were character or virtue goals) and reflect on how many of my other goals have come to fruition – sometimes in completely different ways to what I imagined!

6. PERSPECTIVE 

It’s funny people were so concerned about my broken foot, yet it’s nowhere near the worst thing I’ve dealt with throughout my 20+ year journey! That easily kept it in perspective for me.

Though one thing I’ve often wished I could do over the years is just pause life – do my treatments then restart it again when I have a better version of myself to present to the world. Though sadly it doesn’t work that way. Life continues whether I’m sick or not, so I know now matter what’s happening or how I feel, I just have to get up and show up and try my best. Whether it’s a regular day, my birthday or even Christmas, this is my life every single day. 24/7/365. There are no days off, no breaks – it is a path I didn’t choose.  

There are times when I just want to hide away from the world, but I know I can’t. One such situation was when a friend offered to take me to a Mother’s Day event at school. I sat there the night before, two and a half weeks post op, looking in the mirror thinking it would just be easier not to go. I couldn’t walk, I was sore and bruised from the surgery and still couldn’t even wear a proper bra yet, my skin had broken out from the truckload of steroids in hospital and none of my clothes fit due to the fluid retention from the steroids – so much so I had to rummage through an old bag of donations in the garage just to find something that would fit me.

So as I sat there feeling discouraged I suddenly thought – what was I thinking!? I was going to a Mother’s Day event! MOTHER’S DAY. I was a MOTHER! Something the Dr’s said I may never be, so what was I even complaining about!? Of course I should go and be there for my two little miracles who didn’t care about any of this – they would just want their mum there!

I’m so thankful for the friend who offered to pick me up and push me around there, friends who were pleased to see me, saved a safe seat for me on the edge of a table and those who gave me some lovely words of encouragement. Speaking with a Chaplain friend there, she shared some words of wisdom with me and said I would look back and see it as a little ‘blip’ in the scheme of things which was an encouragement. As uncomfortable as it was to go, I’m really glad I did!

I’ve experienced a lot throughout my health journey and know that I just need to remember things are temporary and constantly changing, so as hard as it still is, I know I just need to have patience and persistence to keep going.

7. PATIENCE, PERSISTENCE & PROGRESS

It’s really not like the movies or TV getting a diagnosis, especially when they are rare conditions. This year was no exception. Where’s House when I need him?! I’m used to things taking a long time – the myositis took over four years to diagnose, my heart condition over 12 months and the Addisonian condition – years and years. Meanwhile years and years of feeling horrendous (to put it mildly) as I was actually being chronically underdosed and unfortunately the consequences of that I’m still dealing with now.

“The surgery and recovery is the easy part for you!” commented one of my surgeons back in April. We are now in December and I’m still not even halfway to where I’m meant to be as yet. Being ‘Steroid Dependent Addisonian’ (a rare life-threatening endocrine condition) makes life incredibly complicated. My body doesn’t produce any cortisol (which is essential to live) so I’m fully steroid dependent and my body requires 4 hourly steroids around the clock (and yes that includes a nice 2:30am alarm). It’s an unpredictable condition, requires constant dose adjustments for a range of things and I carry an emergency steroid injection at all times. Basically the next year will be continuing to navigate all of that and attempts to get my base dose lower which is very hard work. Long road ahead so any prayers for that very much appreciated!

On Christmas Eve it was my 21 year myositis diagnosis anniversary. As I reflected on this, I thought about how 21 symbolises ‘growing up’ and ‘becoming an adult’ – which is exactly how I feel now with the myositis. I know it well, I know how it feels, what helps and what doesn’t, ways of adapting depending on my capabilities and I feel I know how to navigate it reasonably well in many different situations. I’ve learnt to live with it. Whereas the Addisonian condition I feel like I’m in the ‘toddler stage’ at the moment – it’s unpredictable, tiring and every time I think I know what I’m doing, something changes and I’m thrown another curveball! My hope is one day I feel the same about it as I do with the myositis – hopefully sooner than 21 years in!

This year was another year of learning to trust in the timing and having patience through the journey. I had my original MRI on 2 January and didn’t get the official all clear until 31 April when the ‘alien’ looking breast lesion was finally removed the week before. Though despite all the delays, I believe the day I had surgery was meant to be – right down to the staff on that day, the roommates I had in hospital and the post-op staff.

Through Jan to April there were a whole series of unfortunate events which made it quite the rollercoaster of a time. There were weeks waiting to be able to book in for tests and appointments, paperwork going missing, a sonographer not being able to find the right places to biopsy!?, booking in for more biopsies elsewhere only to have my booking ‘lost in the system’ and having to wait another week, having 9 core biopsies all up, being transferred to multiple hospitals because I was ‘too complicated’ of a case, ‘not being well enough to operate’ (though they soon realised this is as good as it gets!), having surgery postponed multiple times and breaking my foot walking normally at home! Throw in a few adrenal issues and post-surgery working incredibly hard to taper steroids for six months at snail’s pace (I’m talking 0.25mg or 0.5mg drops over weeks), only having to go back to where I started overnight as I got covid again! Ahhh!

One night in recent months I was just so exhausted getting my evening meds ready thinking how am I going to keep doing this, but there is really no other choice. I focus on what I can control and what helps. Taking it one day at a time. Four hours at a time sometimes.

Sometimes it feels like snails’ pace and two steps forward and one step back, but a little progress is better than no progress, so I keep going!

8. POLITELY ADVOCATING & EDUCATING 

As I was debriefing my surgery and other appointments with one of my other Doctors she commented, “It is absolutely RIDICULOUS how much you are having to advocate for yourself!” Yes, yes it is!! Thank you! Knowing how to advocate for myself particularly about my Addisonian condition is vital as it can be quite dangerous and life-threatening if incorrectly treated or dosed, which is unfortunately what has happened many times in the past.

Living with rare diseases not many know much about, sadly not even medical professionals, you get used to the puzzled look on everyone’s face who reads your chart and it is quite amusing seeing the same, “What the!?” look on their face, as well constantly being told you are ‘extremely complicated’, ‘unusual’ or ‘unconventional’. I have a whole heap of stories I may share a little more about later (or feel free to ask me about that in person) but the most important thing in those situations is being polite as you really don’t get anywhere otherwise.

I am constantly advocating and educating about my conditions in many different settings, as well with well-meaning people in my life who don’t seem to understand or know that even though you do all the ‘right’ things, sometimes things still don’t make sense and the outcomes don’t match the effort. Knowing how to explain things in easy ways or analogies is helpful in such situations, as well as putting together a collection of good resources. Letters from my Specialists is important in medical settings. Which brings me to my next point – paperwork.

9. PAPERWORK 

I’ve learnt over the years to be super organised when it comes to medical paperwork and making sure I am prepared for many different situations. It all comes from plenty of experiences – I don’t want to share too many stories here as it’s not exactly helpful but let’s just say it’s amazing how much medical admin you do as a patient!

The best tip I can give is to create a ‘Med Cheat Sheet’ of all important info. This saves everyone a whole lot of time and makes everyone’s life easier! Mine includes all my personal info, medical conditions, allergies, medications/doses/times of day I take them, a list of all my Specialists and Drs and emergency contacts – there’s nothing worse than lying in Emergency spelling out names!

I also make sure I get copies of everything I can in terms of scans, results, reports etc as it’s amazing how often these things aren’t transferred. I also have printed out a number of good resources I’ve found over the years about my various conditions, letters from Specialists and I keep all this in a folder I take to all appointments with me.

The Specialists especially love the ‘Med Cheat Sheet’ which saves so much time in appointments – I may have even been called the ‘Perfect Patient’ by a Specialist once hehe!

10. POO PEP TALK – This brings me to my last point – having a laugh in the tough times!

One such time was one night while I was cooking dinner, the emotion overwhelmed me. I could usually manage to keep it for when my children weren’t around but this particular night, it just overwhelmed me and I burst into tears.  

My then six year old daughter came up to me and asked, “What’s wrong Mummy – why are you sad?”

I said, “Oh I’m just feeling sad because I’m not feeling well. I’m sorry for crying. It’s not your job or responsibility to cheer me up, it’s ok. I’m ok. I’m fine!”

As I sat down on a dining room chair, she came closer and gave me a cuddle and then she proceeded to tell me, “Don’t be sorry Mummy! All emotions are ok – happy, sad, angry, scared. Just imagine when you’re not sick anymore Mummy and imagine how good life is going to be!”

She continued with a hilarious analogy that took me a bit by surprise. “Mummy, it’s like when you do a poo – no one wants to do a poo, but you feel heaps better after you do one. It’s like that – so you just need to think about how good your life is going to be when you’re not sick anymore!”

I couldn’t help but burst out laughing amongst the tears! What a hilarious analogy but it was so brilliant!

After that even the thought of it made me smile and giggle and took the seriousness out of the situation and, “Just think of the poo!” was a common phrase in our home in the months after.

So, my encouragement to you whatever you may be going through… “just think of the poo!”