For the many people asking for updates on how this year is going…

1. PERPLEXED, PUZZLED PROFESSIONALS & PROOF

“CRACK!” I heard as the middle of my right foot gave way as I stood in my kitchen one Saturday morning in March.  

At only 35 years old, ‘standing in my kitchen’ was a pretty unimpressive way to break my foot but here I was again, unbelievably and ridiculously almost a year to the day since it happened the first time ‘walking normally at home’. These ongoing bone issues and somewhat spontaneous fractures due to osteoporosis (sometimes a complication of living with myositis), seem to be yet another thing to manage.

It is not unusual for medical professionals to be confused over my case, especially as I have several rare and complex conditions, so I’m used to seeing the same puzzled, perplexed looks on their faces – this time was no different.

We got there in the end (after 2.5 weeks!) with the proof and validation that in fact the loud ‘crack’ I heard and felt, was in fact my foot breaking yet again! The MRI showing a very clear new 4b grade fracture of my 3^rd MT (last year was 5^th MT). Estimated 3–6-month recovery, so back in the boot and wheelchair for the last couple of months and unable to drive. 

2. PRISON OR PURPOSE – THE POWER OF PERSPECTIVE

Perspective is a powerful thing. I had a choice. I could choose to see my loss of independence as a prison like I spent a lot of time feeling like last year or this time I had another choice – to focus on purpose, productivity and pursuing my passions – it was time to do what I was meant to do!

There are times when frustration snuck in and my moonboot felt more like a home detention ankle monitor, but after some initial feelings and expression of said feelings at times (thanks Mum & Dad!), I eventually managed to channel my frustration into something more productive or I was encouraged in another way.

One encouragement came in the last school holidays when I had some appointments and IVIG treatment at the hospital. My husband and children were going to the city for the day while I was there. As we ventured toward the city, I sat in the passenger seat feeling pretty over it all and discouraged, “Ahh I have to go to the hospital when you guys are going to have fun in the city all day”.

But what my son said next stopped me in my tracks. “But why is that a bad thing?” he asked. “You are going to the hospital for the good medicine. It’s a good thing!”

Then my husband chimed in, “Yeah the hospital is your second home! I bet you’ll just be there chatting!”

I had to laugh as that particular day as I wheeled myself into the infusion centre, to my pleasant surprise the two friends I’ve made there were scheduled at the exact same time as me which is rare. As we sat there laughing and joking around in the middle of the infusion centre, I thought this isn’t so bad, maybe this is exactly where I’m supposed to be!

3. PRIZED POSSESSIONS & PURSUING PASSIONS – PLAYING PIANO & PICKING UP THE PAINTBRUSH & PEN AGAIN

A few months ago now there was a cyclone warning for the area we live. As we prepared, I began pondering if in the unlikely situation my home was somehow damaged or I had to evacuate in a hurry – what would I actually take?

After pondering this a while, it was interesting what I would consider to be my prized possessions. They were the sentimental items – photobooks, special letters, writing and art projects. It made me reflect on what I valued and what I was investing in currently, and in what ways I wanted to be more intentional about how I was spending my time in the future.

With that in mind, through this latest season I chose to focus on pursuing my passions –  

• Piano – I started teaching my children piano which they are loving learning and I am especially enjoying the little compositions they are making, complete with their own adorable lyrics!

• Paintbrush – I have set up my art supplies and have picked up my paintbrush again recently, so I look forward to more painting soon!

• Pen – I have been working on a little writing project lately, with some confirmations along the way that I’m on the right track with it. More details on this later!

4. PAIN, PREDICAMENTS & THE POWER OF PRAYER

 “Is your foot painful?” is one question I have been asked countless times in the past couple of months.

To be quite honest, the most painful part of it all has been the impacts my broken foot has had on things logistically with suddenly being unable to drive again. It’s very problematic when your capacity suddenly doesn’t match your responsibilities, especially the logistics of running two young children around and a husband who works in a completely different direction.

One predicament was school transport for my kids. My husband is only available certain days of the week and sometimes travels for work. It was all pretty stressful for a while there, we were thinking about all sorts of different options but we managed to muddle through many times with extra help from my amazing sis-in-law and parents-in-law, though my in-laws were coming from almost 1.5 hours away, so them coming that far and that often was not very sustainable.

I am so thankful for many people praying for the school transport predicament. Our prayers were answered when a friend from prayer group connected me with another school and church family who live close by, who very kindly said they were happy to help us out with transport a couple of afternoons a week. We had never met this family but turns out we have a lot of mutual friends, and our husbands had previously played some tennis together through friends. We are so thankful for this beautiful family and the bonus of the situation has been making some lovely new friends in the process!

We have been overwhelmed with delicious meals over the past few months, especially from the incredible couple from Church who turn up regularly loaded with delicious meals and baking. My son loves their blueberry muffins, and my daughter especially loves their lasagna – most times eating it breakfast, lunch and dinner! We are so grateful to everyone for continuing to look after us and especially for the ongoing prayers! I have felt so supported and loved with people checking in and sending so many encouraging messages, voice notes and I have had a number of special visits from friends at home. I’ve really loved our couch catch ups and great chats the past couple of months!

I have really appreciated family and friends taking the time to help me out in different capacities working around their very full schedules so I have been able to get out of the house occasionally. My Mum came up to take me to IVIG and in for surgery and my mother-in-law stayed and helped with the kids while I was in hospital. I have been blessed by different friends taking me to medical appointments that I couldn’t do via telehealth (which makes waiting rooms a whole lot more fun!), coffees, shopping adventures, a Women’s Conference and a Mother’s Day event at school – a few little highlights of the past few months! Thank you all!  

5. PARENTING, PUPPIES & PETS

I often ponder the impact of me not being well has on my children (ages 7 and 9) or how they are going with these unpredictable changes to their routines. I try to keep the lines of communication open with them and regularly check in with them to make sure they are doing ok.

In recent months I was messaging a friend who also has some chronic health conditions and we were talking about the impact on our kids. We were both saying they seemed to be coping pretty well. Though after my conversation with her, it had me feeling curious about how they were coping with it all.

At dinner that night I thought I would ask the kids what it is like having a sick mum (funnily enough my friend did the same thing with her kids!). Usually, my son is a very sensitive, sweet kid and very easy going and compassionate when it comes to my health, so his answer took me a bit by surprise. He was quick to respond with a disgruntled, “Annoying!” 

Internally I started freaking out a little. Had we reached a new developmental phase? Was he now at an age where it was starting to bother him more? Cautiously but casually I asked him why, bracing myself for his response. His answer was not quite what I was expecting, “Because we can’t get a puppy – because you can’t walk it!” 

Then my daughter added, “Yeah, can I tell you what I don’t like too? Cats give you allergies so we can’t get one of those either!” 

I burst out laughing, relieved! I think they are fine for now! And just so you know they are not being completely deprived of pets. We did offer them the option of getting a guinea pig if they went to bed on time for a whole month – they lasted three nights and we have not heard about the guinea pig since!

6. PERIODS, PROCEDURES & PLANS

You know when you have the feeling about how something is going to play out, so you just try to ignore things for a while, until you decide to finally face the inevitable.

Well in January this year one of my Dr’s said it was well and truly time to face said thing. Long story short it seems in the next couple of months I will be having a hysterectomy (leaving ovaries). I will spare the details here but more than happy to chat to any ladies about it in person or via private message, especially if you’re going through or have been through anything similar. I would love to hear if you have any good tips or anything helpful you can tell me.

Things have been a bit up in the air plans and timing wise with surgeries, which the planner in me does not enjoy! In preparation, I had one surgery in May which was all pretty déjà vu as I was just one bed number away from where I was for surgery last year and had a broken foot yet again! I am also in a very frustrating situation as other things related to my health are essentially on hold right now until after the hysterectomy and recovery over the next however many months. Though as the Seed Stones I took into hospital for my recent surgery remind me, I need to ‘trust in the timing’.

7. PILLS, PREDNISONE & PUFFINESS

Due to circumstances out of my control I’m on a higher dose of prednisone at the moment which means I’m very puffy as I’m also retaining a large amount of fluid. I’ve had this happen many times over the years as I have been on a range of doses over the past 21 years and due to the nature of myositis, doses fluctuate (some comparison photos below!)

I blow up like a balloon every time I’m on higher doses – from my face right to my feet and there is nothing I can take to counteract the fluid due to my other conditions. Most of my clothes are in boxes up the top of my wardrobe as they don’t fit me right now and I have also received several comments from people who don’t understand the fluid retention.

As my dose decreases so does the fluid – but unfortunately, it is a very long road ahead with having to go even higher for my upcoming surgery/recovery, then eventually post-recovery I will be able to very, very slowly taper down (a painfully slow 0.25mg at a time over weeks/months) over the next few years depending on how the myositis, my heart etc cope with that. There have been a number of setbacks out of my control, so it’s taken a whole lot of hard work to even get to the dose I’m currently on at the moment. To make things even more complicated my doses (and fluid levels) are frequently changing due to being ‘Addisonian’.

Many people have never heard of this condition, so I get a lot of questions about it. I’m ‘Steroid Dependent Addisonian’ which is a rare life-threatening endocrine condition. My adrenal glands have failed and do not make cortisol – a hormone which is essential to live, so I am on constant steroid replacement for the rest of my life.

My body requires steroid replacement 4 hourly around the clock, including a 2:30am alarm every morning. Some Specialists have suggested one day a cortisol pump may be a better option for me for continuous steroids, especially overnight. (I really look forward to sleeping through the night again one day!!)

Being Addisonian I am constantly at risk of going into a potentially life-threatening adrenal/Addisonian crisis, so I wear a medical bracelet and always carry emergency medication and an emergency injection with me. My triggers of adrenal crisis may be things such as extra sickness (especially gastro), significant myositis flares or vomiting episodes, infection, injury, medical procedures, surgeries, monthly cycle, physical exertion, dehydration, significant emotional stress, or any other considerable ‘stress’ on the body. I’m constantly adjusting my medication doses depending on what’s happening with my body, with guidance from certain protocols (‘Sick Day Rules’) and with ongoing guidance from Specialists.

If I’m unable to take my medication for any reason (such as vomiting) it results in me ending up in hospital on an IV hydrocortisone (steroid infusion) and for surgeries I’m admitted the day before to go on an infusion which I continue for a day or two post-surgery. It’s a very complex condition and unfortunately also requires a whole lot of educating and advocating for myself, though on the plus I’m slowly feeling more confident in learning to navigate it.

8. PAINFUL PAPERWORK, PROGRESS & PHENOMENAL PEOPLE

Sometimes it feels as though being chronically ill is a full-time job. The numerous appointments, the behind-the-scenes painful medical admin, constantly advocating and educating etc – I won’t go into all this but to put it mildly, it can all feel somewhat exasperating and exhausting much of the time!

Something that makes it somewhat less painful are those rare phenomenal people you come across who you feel genuinely want to help you and who genuinely care. Those people who are quite happy to work with others and actually act like you’re on the same team!! Those who validate what you are going through, offer compassion and understanding as well as providing you with the help you need. There is so much value in someone saying, “I’m here to listen” or acknowledging it is hard and offering a, “This is rubbish!” (or something to that effect!). Those people you can be honest with and the ones who you can tell genuinely want to help you. Those people who go above and beyond!

So, thank you to those phenomenal people out there who genuinely care!! You make a huge difference!!  

9. PATIENCE, PACING & PRAYERS FOR PROTECTION

When I was first diagnosed with myositis, I remember reading ‘a person with myositis will need to take frequent rests throughout the day’ which has certainly been true for me. I’ve had to learn to adapt to living with myositis and I feel quite confident now after so many years – though I have to admit I am not yet feeling so confident in navigating these fractures, which is keeping me on my toes!

As I embark on the uncertainty of this unfamiliar territory, I would love prayers for protection, for stronger bones and for guidance as to how to best manage this. The issues with my bones are ongoing so I need to learn to navigate and manage long term. In terms of treatment, I am on daily bone treatments but extra bone treatments like infusions can be quite complex and some you cannot do continuously, so I am currently on what they call a ‘bone treatment holiday’ (would much prefer a different kind of holiday!) so for now I wait to see what the plan is moving ahead.  

As I continue to recover from this most recent fracture, I am easing into things slowly which is taking a lot of patience and pacing myself is vital in now managing the risk of future fractures. I’m hoping with time I will feel more confident in navigating this and figuring out what my body can handle. One of my friends suggested that I just put on my moonboot in March every year now as a precaution!  

10. PIGGY BACKS AND RUNNING RACES

One thing that has been comforting to me the past few months is knowing all this is temporary. Knowing all I go through on this earth will one day be over.

As well as thinking of how grateful I am to still be here, I have been pondering something my children said to me a few years back that has been on my mind a lot lately.

“It’s ok Mummy if you’re not better yet. One day you will be in Heaven – we will have running races there and you can give us piggy backs! So don’t worry, one day you will be all better!”

Wow! When did I lose that child-like faith? It is so simple yet so profound. That perspective shift brought me such comfort, peace, and hope. I had previously wrestled so much that I was not healed yet but now I like to think of it as a journey not so much a destination, after all ‘healing’ is a verb.

I have hope that one day, whether it is here on Earth or if I need to wait until Heaven, that every day I’m one step closer to being healed and I really look forward to those piggy backs and running races!