Living with Heart

Who I am


I am Michelle – a mother, a wife, a quilter, a thinker, a woman who lives a full life with Psoriatic Arthritis, a passionate amateur visual merchandiser, a lover of travel, a fabricologist, a socialiser, an occasional drinker (well maybe more than occasional) and a lover of learning.

I have a mind full of doing with a body that won’t keep up. This blog is my life through the lens of living with a chronic condition. (But I really hate the word ‘chronic’ – maybe I could say painful condition – but that sounds like I’m constipated). 

So the name My Joint Perspective is just that – my life from the perspective of having a joint disease – Psoriatic Arthritis. Come along and join me on the journey.

My Family

No one is as they appear to be. These days we all have this immaculate filtered life that we show the world. Well that just ain’t the real deal. My two kids, Son Dizzle, 22 and daughter Gem, 21 are absolutely imperfect and gloriously flawed just like I am. Despite my sometimes casual parenting style they are still alive & kicking and haven’t (as yet) destroyed my 23 year marriage to Husband of the Year (HotY). We are in a state of flux right now with a delightful full empty nest just in sight….almost within reach….almost there….watch this space.

My Husband is my rock, my supporter, my cheer squad, sometimes my carer. So totes trite to say “Without him I would be nowhere” – so I won’t say it. But he is an integral part of keeping me anchored here.

I am really hoping you all realise that the above are not my kids real names – lol (but absolutely no judgement if you have kids called Dizzle &/or Gem – no judgement only love and support). I’m trying to keep this blog real but maybe one step away from my family (you open that can of worms and bat shit crazy comes out). Seriously, I care about my kids future privacy (even if they don’t) – can you tell which one I like the most?

Parenting Gen Y /Dot Commers

“Parents are the bones that children sharpen their teeth on – and of what use if they are soft.”

I believe in the parenting style of calculated neglect and my adult kids are the product of this. 

They never owned umbrellas or gumboots – they got wet. 

They never climbed a tree that they couldn’t get down from (I made it abundantly clear that if they went up they had to find a way down themselves – Gem spent a few hilarious hours up a tree once, before finding her way down. But only once). 

Calculated Neglect is about teaching your kids resilience and problem solving skills. It’s about giving them a reason to feel good about themselves because they have actually achieved something themselves. Without assistance, without getting an artificial ‘participation’ ribbon because little Johnny can’t go home empty handed. When Gem climbed down from that tree she believed she could conquer anything (and might I say that this was a freakin’ awesome ‘girl power’ moment).

We leave our doors unlocked. There are way more things to be scared of out there and in here than someone physically breaking in (sometimes I wouldn’t mind the company – if they were nice and bought a decent bottle of Pinot Gris). 

The shit scary stuff for parents right now is happening right where you are now – on the net. My kids’ generation were the first to go through adolescence with the internet – we learnt on the go a whole heap of what to do and what not to do. I’ll be adding posts about some of the scary, hilarious and sometimes illegal pitfalls that our family went through before finding our feet (if we ever did). 

My one piece of sage wisdom is to set boundaries and stick to them like super glue. Like really stick to them. Seriously stick to your boundaries. Did I mention super glue?

If you say to your teen – “Put your phone away for dinner or you wont be eating it” – be absolutely prepared to follow through – or don’t bother saying it. 

As the quote above implies, kids will push you to breaking point, they will literally sharpen their teeth on you. You need to push back. Push back just enough to set your boundaries but not enough to break their spirit.

You are not around to be your kid’s friend – until they hit the Magic Age. This Magic Age is different for every kid and it’s when you can let your guard down and start relating to your older teen/young adult in a more relaxed fashion.

Dizzle and Gem currently appear – on initial inspection – to be functioning young adults with jobs, study and other first world problems. They are occasionally at the Magic Age  – but just you scratch the surface and the shit will hit the fan! This blog will assist the shit hitting the fan to land in an orderly fashion (and I just quoted Abraham from The Walking Dead)

A home is a home – even when its an apartment

So we live in an empty nest twilight zone. In 2013 we sold our big old house and bought 2 apartments. HotY and I live in one and the kids live 2 floors below in another. So, they don’t really technically live with us but they sort of do. We share our dinners up here in Parent Land and then the kids scurry back to Party Land (which can become Study Land at roughly 6 monthly intervals). Great arrangement? Totes YES. Downsides – well you’ll be hearing about them.

Making this extreme downsizing move was prompted by my health issues. HotY and I wanted to make the decision to simplify while I was still able to, while it wasn’t really needed but might be in the future. We are never going back to House Living – it seems like a strange phase we went through and got out of just in time.

The process of downsizing took us 2 years from first floating the idea to making the move. We got rid of 70% of our possessions. We gave away most of these – my husband knew the local Salvation Army guys on a first name basis. More on this to come.

Psoriatic Arthritis - previously known as Seronegative Inflammatory Arthritis

My Psoriatic Arthritis has been living with me since 2007 – for years it went by the name Seronegative Inflammatory Arthritis but recently had an uninteresting name change to Psoriatic Arthritis. We are at times uncomfortable with each other and there’s anger and maybe resentment. But mostly we live with respect for each other. PsA is now part of me and informs every part of how I live. It has also brought along Fibromyalgia, Sjogrens Syndrome and probably other stuff that just means “my life is full”. 

It has had a profound affect on the way that I parent and on the very fabric of our family. My kids were 11 & 12 when I first was unwell and they had to step up – literally and figuratively. In some ways it has brought us closer together as a family but in other ways it has made Dizzle and Gem almost too resilient.

For my readers out there on the net – Psoriatic Arthritis is a type of seronegative Inflammatory Arthritis that mainly affects the large joints of a person’s body – hips, shoulders, knees, areas of the spine as well as causing entheitis (areas of inflammation where large tendons insert into the bone). Massive fatigue, eye problems etc come with the package.

For me, my PsA affects my spine, my hands/fingers and causes massive dry eyes/dry mouth. My PsA also loves my left heel – like seriously adores it. For some reason that left heel is 8/10 pain with every step. My PsA is a condition that causes pain – a whole lotta pain. But I have chosen to live with it rather than to suffer from it!!!

My thoughts on treatment for Psoriatic Arthritis and Inflammatory Arthritis:

This can be a polarising issue for some. I am Pro whatever gets you through each day, one day at a time in a state that allows you to smile at least once a day. I personally believe that western treatment and medication (even though the drugs can be harsh) is the best evidence based treatment for Inflammatory Arthritis of any type – whether it’s Rheumatoid Arthritis, Ankylosing Spondylitis etc. 

Over the last 9 years I have tried at various times massage, acupuncture, reflexology, moxibustion and a brief flirtation with Traditional Chinese Medicine. The TCM man I was seeing at the time of diagnosis said that he would not continue to treat me if I started Methotrexate. I felt so sad (not sad) that I had to say farewell. 

I have not found, at this stage, that diet has played a positive or negative role in how my symptoms of swelling, pain and fatigue play out. The one exception would be Fish Oil. Just after diagnosis I started having a tablespoon of Fish Oil every morning and found this to be a very good anti-inflammatory. However, after a few years gastro issues led to me stop this. 

On the other hand, I have a dear friend M with RA that has been on a mostly vegan diet for a few months and swears by it. For her, it has added so much more activity and a lessening of symptoms. So there is definitely no ‘one size fits all’ treatment for inflammatory arthritis.

A drug by any other name…

Like many – I am on medication for my PsA. The aim is to reduce overall inflammation in my body to prevent destruction of joints and tendons. The result of these medications is that I have a very suppressed immune system. Main drugs I’m currently on – as at November 2016:


Methotrexate (subcutaneous injection equiv to 20mg orally)