I’m pretty sure that the majority of us have probably heard all, if not most of the following sayings; “You don’t know what is around the corner.” “If only I knew then what I know now.” “It is only a matter of time.” “It’s amazing how quickly a person’s life can change” “One minute everything is hunky dory, the next!”
Or how about the following; “Normal, what is normal?” “You never know when your time is up.” “Stable? That’s where horses live, aint it.”
“Nek minnit*” Now for those of you not familiar with Kiwi slang that last one you might want to look up on Google or something (or you can always skip to the end of this post for a bit of a low down on the phrase 🙂).
The thing is, living with a dynamic disability or disease, let alone a rare disorder such as Scleroderma, can leave you thinking that life is a never-ending cycle of appointments and follow-ups, check-ins and questions, ups and downs, never knowing what’s gonna happen next.
I’ve previously mentioned that life with this disease can be like a bit of a rollercoaster ride, or maybe more appropriately life can occasionally throw us a curveball, or at least leave us feeling as if we’ve been involved in a game that is literally end to end and your not quite sure what the outcome is going to be.
Only a few short weeks ago, we had a pleasant conversation with the rheumatologist at a follow-up appointment in which he mentioned, after taking stock of my recent echocardiogram results, CT Scan and general observations that things have settled down – mostly!
Apart from the need to have a separate IVU CT scan on my kidneys I appear to be ‘stable!’
An irregularity was initially picked up earlier on in the year when I had my chest CT scan and I was put on a 32 week public system wait list to get another scan done lower down.
After waiting more than 32 weeks, we went private as the wait time had increased to over a year, and within a few days an appointment was confirmed for about two weeks later.
I’ll no doubt fill you in on more about this in my next health update, as I’m currently waiting on a referral for a Urologist appointment. Stable for the most part – at least health wise that is 🤪
Now, unfortunately, that does not mean that my disease has gone into remission or anything! It is just that with the right dosage and timing of medications that I am on and how I’ve been approaching life dealing with this disease, mainting healthy eating habits, exercise and stress, etc. that we seem to have been able to keep everything in check (ish).
However, there were obviously a few caveats in that observation – especially in the unfortunate event that I pick up a bug or something – “Nek minnit!” 🤔
Last year, I had the unfortunate experience of suffering from Neutropenia after catching a viral infection not long after having my Rituximab infusion. This saw my neutrophils and white blood cell count bottom out completely and I experienced a fall in the middle of the night, splitting my head open on the bathroom tile floor.
Let’s just say that the mantra ‘she’ll be right’ didn’t come to fruition and Annette took me to hospital in the wee small hours of the morning. This necessitated about a week in hospital before being discharged and us instituting a whole new health regime going forward to get some sense of equilibrium in our lives.
Anyhow this year, I get to experience the opposite of neutropenia – Neutrophilia (more on that shortly).
I’ve had a persistent dry cough for the past couple of months that hadn’t cleared, so we finally went to the doctor to get on top of it. And after a couple of short stints on Prednisone to try and clear what was sitting in my chest it finally came to something – and with a vengeance.
My breathlessness started getting worse, especially after severe bouts of rasping coughs that brought up copious amounts of dirty looking phlegm, a raw throat, muscles in and around the chest and back that were severely affected by the constant bouts of hacking; along with the fatigue that came on string as the body tries to fight all the other things going on along with the occasional unsteadiness on my feet (moments that were hardly stable 🤪)
So I went to see the local GP again and I am now on a course of antibiotics to clear whatever infection has been causing me discomfort, and I’m awaiting another x-ray to get to the bottom of things that are going on for me at the moment.
So, what is Neutrophilia? The body naturally produces extra neutrophils to help fight infections, inflammation, or stress – However, having too many (more than 7,500 neutrophils per microliter of blood in adults) can limit the ability of our immune system to fight the pathogens present and heal properly.
My latest blood test results show that I have almost 3 times the normal amount of neutrophils an adult should have in their system – 20,200 per microliter of blood 😒
And the thing is, Neutrophilia can potentially lead to any underlying infection becoming severe, it can bring on sepsis and organ damage from chronic inflammation, and it increases the risk of blood clots in the body.
Nek minnit!
So, just when I thought everything was on the up and up and I was starting to get in my head that I can push myself just a tad more to get things done – I’ve spent pretty much the past two days mostly tucked up in bed. Quickly finding that I get exhausted doing just about anything.
Hopefully, by getting on top of this reasonably early, it won’t turn into pneumonia and another hospital visit – although the remainder of the weekend I’m having to keep an eye on my temperature, heart rate and oxygen saturation more stringently than I have been of late.
Also, I need to keep a close eye out for any hot or cold chills / fever, as that will mean having to head into Christchurch Emergency Department immediately for a visit and possible extended stay – certainly not something I want to happen at this point.
Life with scleroderma keeps on giving and giving, and at times, I don’t like it one bit especially as I often get told that I am looking good and don’t look sick 😒
On the positive side (as there has always got to be a silver lining right!) It has enabled me to meet a lot of wonderful people and I’ve been blessed to journey alongside some along the way, as we each navigate new normals that come our way – And when I look around at others that are facing the many challenges that this rare dynamic disease exhibits I recognise that there is no such thing is normal. It is a setting on a washing machine (or at least it used to be) 🤪
In the meantime, be grateful for what you have – ’cause in a split second your life can be turned upside down – in essence, this is what the phrase ‘nek minnit’ is alluding to.
I’ll carry on riding the rollercoaster of life with its many ups and downs, and enjoy it as much as possible while I can even with its many challenges along the way.
Blessings ’til next time 🌻
* FYI – Google AI says that the phrase ‘nek minnit’ became famous due to a viral 2011 YouTube video of New Zealand skateboarder Levi Hawken.
In the nine-second clip, he jokes about a hypothetical situation, saying: “Left my scooter outside the dairy; nek minnit…” before panning the camera to an already-broken scooter.
The phrase quickly entered everyday New Zealand language and became a popular internet meme, used to humorously punctuate a story where something unexpected happens in a short amount of time.
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