Tag Archives: auto-immune disease

Ouch! Killing a Killer Sinus Attack.

Only a few days ago, I was jubilantly chirping about finding my happy feet. Well, I should’ve held onto that thought. Stuck it onto my forehead with superglue, although it would need to be written backwards so I could read it in the mirror. “Life is Great”. However, please don’t ask me to actually write that backwards at the moment, as I’m not thinking clearly. I was simply being dramatic.

For those of you who’ve been following my trials and tribulations, you might recall that I was fighting off Fergus the Omnipresent Operatic Cough for about 6 months and it was getting me down. He was so darn persistent that he could’ve taught Calvin Cooledge a thing or two about persistence.

“Nothing in the world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent.”

Calvin Coolidge

Well, I managed to have a good couple of weeks, but then Fergus decided to get sneaky. Or, perhaps like me, he has no sense of direction and he was actually heading back down to my lungs, but ended up in my sinuses by mistake. I don’t know. Either way, the results are the same. I’ve been in excruciating pain and my entire head felt like it was being compressed in a vice and the evil Fergus was turning the handle and laughing, of course and his evil eyes glowing like Christmas lights.

Actually, that shouldn’t be written in the past tense. That’s because Fergus is still at it and flaunting his malevolence. Nothing makes Fergus happier than a bit of torture.

Anyway, I’d been having these intense headaches for a few days, and wondering why my eyes were aching and was getting a bit concerned. Other than having Fergus is my sinuses, I have hydrocephalus and a shunt in my head and these were all the kind of symptoms associated with a block shunt and a trip back to the brain surgeon. With my daughter’s birthday tomorrow, slumber party and associated comings and goings, brain surgery wasn’t exactly on my list.

So, I was starting to get concerned. Just a little concerned. Nothing approaching a major, full-on panic attack with all the bells and whistles. However, then I blew my nose, and I swear a real, living breathing alien jumped out. It was freaky, weird and almost terrifying. I’m not going to thrill you with a graphic description or photographic evidence, but let’s just say this thing was a cross between a Killer python and a jelly rat. The sort of thing that has the infection control Police out in their lab coats, masks, rubber gloves and buckets of Domestos. It’s Quarantine.

Fortunately, I was booked in for an appointment with my rheumatologist at Royal North Shore Hospital. This is one of Australia’s top public and research hospital and home to weird and wonderful conditions like my dermatomyositis. My husband, offering whatever encouragement he could to his embattled soldier, said I was going to the right place for the day. True! Why would I want to go to a tropical island when I could be at the hospital? Well, when you’re feeling that crook and concerned your brain’s being devoured by infection, the deserted island can wait. I was looking forward to going back to my familiar stomping ground where there’s enough expertise from rheumatology, lungs, brain, exploding sinuses to handle whatever Fergus was going to dish up this time.

Well, much to my relief, they let me go and I left with a script for more industrial strength antibiotics, and I actually managed to have an extended coffee with my best friend from school at a cafe near the station.(I perk up well).

I should also mention that I was reading Markus Zusak’s: The Book Thief on the train and in the waiting room. It’s a funny book to be reading when you’re feeling really crook and wondering if your number’s about to come up, but it’s beautifully written. I loved the film and started reading the book and got distracted, but wanted to have another go.

Train trips are always a good way for me to really get stuck into a book as it takes about 90 minutes to get to the hospital. Moreover, it’s uninterrupted time and not that jerky stop start reading you have when you’re going off to sleep. Have you read The Book Thief? It’s just brilliant and the language is so poetic and beautiful. It’s also very philosophical, which I love as well. So, after a day of train trips and waiting rooms, I’m now up to page 164 and I take my time to absorb the prose as well. It hasn’t been an express read. I like to let the words and the magic settle like Autumn leaves in the snow (not that we have either here).

Anyway, I woke up at midday today after my husband handled the morning run. I can’t begin to describe the throbbing pain. However,  even walking a metre or so to the bathroom was a huge agononizing effort and I had a glass of water hoping that would help. It was a separate trip to get some Panadol out of my husband’s drawer. I have never experienced pain like this. I had to let those process before I could even ring my husband to tell him how sick I was. That was very humbling, scary. Nobody wants to be that vulnerable. So stuck in a dreadful situation and unable to respond.

Fortunately, for me it was temporary. I rang my husband which perked me up a bit and the Panadol and water were starting to work. With a huge blow on my nose, there was also more relief. I’ll be heading off to pick the kids up from school soon and I’ll be back on my feet in my usual style. Rowena is fine.

I’m glad I’m feeling better and finding ways to keep going, get back on my feet and not let chronic health control my life. Yet, on the other hand, I could use some TLC and my own private nurse to take care of me. Peel me grapes. I know I need to rest.

Do you live with anything ongoing, which is challenges you? Please share in the comments and upload your inner Fergus.

xx Rowena

Life Was Meant To Be Easy.

According to the “Feel Good School of Thought”, life is meant to be easy. Adversity is a transitory thing that we can simply power through, as long as we “think happy thoughts” and “stay positive”. “If it feels good, do it. If it feels bad, give up.” However, from this perspective, we might as well pull the pin when “shit happens”. There is no reason to live.

Yet, ironically humans thrive on being challenged, using our problem-solving abilities, and overcoming adversity. We’re meant to use what we’ve got, even if some of the equipment isn’t in peak form. Indeed, adapting to these challenges stimulates the mind. After all, we were never designed to be couch potatoes, or even worse, liquid mash. Rather, we were meant to grow roots and broad branches, and stand tall on the inside, no matter what our design. Just think about how often you hear heroic stories of everyday people overcoming huge setbacks and surging forward in a new direction. Indeed, their curse can even become their blessing. The Paralympians embody such triumphs.

“I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.

So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.

Once you choose hope, anything’s possible.”

-Christopher Reeve.

At a more basic level, I remember my Dad encouraging to overcome fear and have a go. His big line was: “it’ll put hair on your chest”. As a little girl, I didn’t quite get what he meant and took him quite literally and I didn’t want hair on my chest. However, these days, this sort of grit has been rebadged as “resilience”. This school of thought poses that we need to experience the bumps and knocks of life to grow stronger and prepare us for the big hit. This isn’t as much fun as thinking happy thoughts and only doing what feels good, but we do emerge more rounded and as the Scouts would say: “prepared”.

While that all sounds great in theory, it’s quite a different story when you’re lying face down in the mud with no known way of getting up. At this point, it’s quite natural to feel overwhelmed by shock, disbelief, anger and self-pity. However, if you want to move beyond subsistence, you have get yourself out of the quagmire and start thinking about taking those first few critical steps, be they literal or somehow figurative.  Staying put isn’t an option.

Rowena

This isn’t theory for me, but my own, personal experience. I have walked the talk, sometimes needing assistance.

When I was 25, I was diagnosed with hydrocephalus or fluid on the brain and six months later had brain surgery to insert a VP shunt. The hydrocephalus was pretty freaky. Although it was largely dormant for the first 25 years of my life, it rapidly became symptomatic and for the six month period in between diagnosis and surgery, I lived the bizarre and traumatic life of Oliver Sacks’s: The Man Who Mistook His Wife For A Hat. I had 6 months of intensive rehabilitation, learning how to walk and had occupational therapy to manage my life again. This all culminated in moving back in with Mum and Dad and a year off work. That in itself felt terminal. After all, when you’re living the story, you don’t know how it’s going to end. I slowly got back on my feet. Returned to work. Got Married. Had two kids. Then, the thunderbolt of medical misfortune struck for a second time. The birth of my daughter, triggered so much more than maternal joy. My hands turned raw. As it progressed, I couldn’t sit on the floor and get up again, dress myself. Eventually, 18 months later, I was finally diagnosed with dermatomyositis (DM), an exceptionally rare auto-immune disease where your muscles and skin cells attack themselves. As soon as I was diagnosed, I was put in a wheelchair and spent the next week or two in that and the next couple of weeks in a walking frame. I was only 36. Treatment made a vast improvement, but I went on to develop Institial Lung Disease with fibrosis, and affiliated chest infections nearly take me out most years. The Cough has now become such a permanent fixture, that I’ve called him Fergus.

I didn’t respond well to treatment for the DM, and five years ago, I had seven treatments of chemo. My specialist also changed my meds and I’ve been in remission ever since. Not smooth sailing, but still a relief. My kids are now about to turn 14 and 12 and still have their Mum. Moreover, I’m still an active part of their lives, even if I’ve had five years off work. I am so very thankful to be here. Yet, there are still times, especially when the cough flares up, that I get fed up. After all, I’m human, not invincible.

With the New Year, I’ve been rethinking my status quo and wondering how to get back into some paid work, while coughing like a mongrel dog and feeling dreadful in so many ways, that it’s tempting to sink underneath the waves and give up.

Prior to chemo, I had been employed as the Marketing Manager for a local IT Company one to two days a week. I’d also been working towards a motivational book about turning your mountain around. I had it all planned out. What had started out with a rather feeble New Year’s resolution to vaguely improve my heath through green smoothies, evolved into a surprisingly productive year. I lost 10 kilos, took up the violin and performed at the end of year concert, started the blog and tackled all sort of challenges at an adventure camp run by Muscular Dystrophy NSW…quad bike riding, sand boarding, para-sailing. It was incredible. I’d pulled off so many things I’d never thought possible, and was almost on top of the world.

 

All of these breakthroughs and successes were definitely book worthy and I thought my story could encourage others experiencing the hard knocks of fate, to give living a go. Living with two debilitating, life-threatening medical conditions and consequent disabilities, I was proof that it was possible to carpe diem seize the day even through times of serious adversity. However, my story wasn’t going to end there. The icing on the cake, which I intended to be the finale of the book, was skiing down Perisher’s Front Valley, in effect, turning my mountain around. Yahoo!

Rowena skiing downhill Fri

Skiing in Perisher. You can see my instructor, Tom, in the background…the wind beneath my wings. I went as a member of the Disabled Winter Sports’ Association.

That was the plan. However, while I triumphantly skied down Front Valley, my “victory” didn’t match my expectations. Rather than the exhilaration of triumph, I felt my gut sink with unbridled terror as I perched precariously over the edge, with a huge drop off down the slope to the village below. I felt like fleeing straight back to the safety of the “magic carpet”. However, I had my ski instructor with me and Tom went backwards down the steep start and held my hands to ease me down. By the time I finally reached the bottom after a few spills, I was more relieved than jubilant and I was just glad it was over.

However, the story doesn’t end there. Triumph soon did a terrifying back flip, and even before we left Perisher, I’d developed a nasty chest infection, which turned into life threatening pneumonia. Indeed, one night in between coughing bouts, I actually stopped breathing.

rowena piano

Playing Moonlight Sonata after chemo.

At this point, I also found out that the auto-immune disease was in a serious flare and was attacking my lungs. The Institial Lung Disease had become active and I had marked fibrosis in my lungs. Moreover, the report on my lungs read like the contents of a vacuum cleaner bag…ground glass, honeycomb. I was actually surprised there wasn’t any dog hair in there. Anyway, they started me on chemo (cyclophosphamide) a week before Christmas 2012 and I’ve got to say, I didn’t expect to be alive for Christmas 2017. I am a living, breathing miracle, which has been a comprehensive and intensive team effort.

As you could imagine, pneumonia and chemo weren’t the grand finale I’d planned for the book and the book is still on hold as I wrestle with what it really means to be a survivor, grappling with my numerous battle scars and LIVE on. I don’t merely want to exist.

This isn’t something I think about all the time. However, with the new year, I’ve revisited all of this. I’m still wrestling with THE COUGH, while also trying to get back to some kind of meaningful paid work. The two of them are looking very incompatible at the moment, but surely I can find something?

Pursuing this question further requires me to accept my weaknesses, but also to acknowledge and embrace my strengths. Know that I am not a dud. Rather, I’m human. We all make mistakes and have strengths and weaknesses. Of course, that’s something I would say with conviction to anyone else, but I struggle to find that in myself.

So, I guess this takes me to George Bernard Shaw:

“Life is not meant to be easy, my child but take courage: it can be delightful.”

When you’ve experienced adversity, how have you kept your head above water? Please leave your thoughts in the comments and links through to any posts.

Best wishes,

Rowena

This post was published on Smorgasbord – Variety is the Spice of Life.

Sickies…Dogs Don’t Lie.

As a parent, I’m always wary when the kids bung on one of their dying swan “can I stay home from school” routines. These performances can be worthy of an Academy Award. Yet, all too often when I’ve given them the benefit of the doubt, they resurrect like Lazarus and “party like it’s 1999”.

Bilbo with ball

Bilbo in peak performance appropriating another dog’s ball.

On the other hand, our dog’s never chucked a sickie in his life. He’s either chasing his ball with mad obsessive focus and eating like a hollow-legged teen. Or, he’s seriously ill. Moreover, when it comes to jumping in the car and going to the beach, he at the door in a flash. Never tells me to “wait”. Indeed, he’d be out the door already if he could open it himself.

However, Bilbo is no longer a pup. He’s now 77 in dog years, and he’d be forgiven for requesting a Dawson Chair, a Zimmer frame and signing up for the pension. However, being a Border Collie to the core, he tells me there’s life in the old dog yet.

Unfortunately, Bilbo is gravely ill. Last week, he started getting sluggish, and my radar kicked in. We noticed he coughed up a blood cyst, but as he was still eating, we didn’t rush him off to the vet. However, last night he went off his food and when that continued this morning, we knew it was time.  By this point, we were obviously expecting one of those conversations you don’t want to have with the vet. Not only in terms of what might be wrong with him, and there might be nothing they can do. There’s also that other conversation. That is, that there is treatment, but what is it going to cost? It’s hard to put a measurement on love that knows no bounds. Yet, the bank balance doesn’t understand that, and shows no mercy. It’s a callous brute without compassion.

However, all those thoughts could wait. We still had a few hours before we could get into the vet.

Since the dogs were already in the car, I decided to take them to the beach. Not the best move, in hindsight as the vet has ordered him to rest. However, I’m not a vet. I’m his Mum and knowing how much he loves the beach and what it’s means to us, I wanted him to be in his favourite place…his heaven on earth.

IMG_0998.JPG

However, if I needed confirmation that Bilbo wasn’t well, this was it. He laboured down the beach so slowly, that he was his own ghost. I threw his ball, and he didn’t blink. He just let it roll into the water. I tried a few more times with the same result, retrieving the ball myself. As much as I’ve thought his obsession with the tennis ball was extreme, seriously annoying and beyond the realms of addiction, this was worse. It felt like an echoing emptyness, if that makes any sense.

Yet, like a noble warrior, he ultimately did have a few laboured efforts.

Bilbo and Maya

You have to feel for the old dog unable to chase his ball, when some young whippersnapper races off with it.

Meanwhile, his young mates chased the ball like maniacs, legs whirling furiously through the sand.

By this point, you’d expect that some kind of emotion would set in, but I was blank. Couldn’t feel anything. It’s a day we’ve known is coming, and I don’t know how to react. I don’t feel I can cry anymore. That there aren’t any tears. That too much has happened and I’ve become a rock. A rock with some kind of senses, but nothing like who I was.

Or, perhaps, I’ve simply grown up. Become resiliant.

This would be a good thing because this time we lose a dog, I have to be the strong one. I have to be the rock supporting the kids. Mum can’t go to pieces. Can’t be the mess. I need to put on the big high heels and answer their questions, hug and comfort them and wipe away their tears, especially as they don’t even remember life without Bilbo. Miss was about 10 months old and crawling when Bilbo arrived and Mr was 3 years old. I still remember how Mr missed our previous dog (a huge Old English Sheepdog called Rufus) and didn’t like the new puppy because he wanted a big dog. Mr had been able to sit on Rufus and use him as a horse. He was a very big dog indeed.

Newton Family & bilbo

A family photo with Bilbo as a pup Mother’s Day, 2007.

So, Bilbo has been part of our family during a very special ten years of our lives.

Yet, it’s not time to get all misty eyed yet. At this point, we’re still at the beach. It’s 18°C and a gloriously sunny Winter’s day and the beach is magic.

Mid-morning, we return to the vet. He quickly points out that Bilbo’s gums and tongue are an exceptionally pale shade of pink and I’m quite shocked. He took some blood and we were sent out to wait. My husband ducked off to pick our daughter up from dancing. I wasn’t sure she should be there, but figured that the vet’s better versed at this than us. That if there is bad news, the vet no doubt knows what to say.

Bilbo + Amelia

11 years is a long time in human years too!

The news from the vet wasn’t good, but it wasn’t all bad. At this point, it seems that Bilbo could have an unpronouncable auto-immune disease. I can’t remember what the vet called it, and meant to write it down. His red blood cell count is down to 2.86 (should be 5.65-8.87) and his haemoglobin is 5.3 when it should be 13.1 – 20.5). He has just enough platelets to hope the treatment could work. His white cell count is high and he seems to be fighting back. He was given an injection of prednisone and is on tablets. I take him back on Monday morning for a CT of his spleen and a followup.

Meanwhile, I started my own, additional treatment. We bought him some fresh mince to see if that might stimulate his appetite and we had a rather hungry dog. He’s eaten 500g of mince tonight, minus a few donations to Lady, our other dog. It’s not going to cure him, but it might give him a fighting chance. Get him over the hump. It’s also much cheaper than a blood transfusion!!

Of course, I’m hopeful that he’s going to be okay. That there isn’t going to be something else going on and he’ll respond to treatment. He’s been in good health, so surely that must help… That “he’ll be right, mate.”

….

Well, it’s now Sunday afternoon. Bilbo’s still with us and lying on my lap quite happy to be a lap top dog. He’s eating the mince, but not so keen on his kibble. He’s perked up a fair bit. Yet, his beathing is very rapid, and I guess that’s the big concern and we still need to take that CT of his spleen.

So, I am feeling optimistic. No doubt, it’s the sort of optimism based on wishful thinking. An optimism which could seriously backfire and hurt like hell.

Yet, like the kids who don’t know life without Bilbo, I can’t imagine it either and am still hopeful that the vet might find that magic pill which will give him eternal life.

Meanwhile, Bilbo’s been instructed to “Stay. Don’t go near the Rainbow Bridge. Why don’t you watch a bit of TV….”

Yet, although he’s always been an incredibly obedient and faithful dog, there will  come a time when that last journey will come.

All the same, can I put in a request?

Not yet…

Thank you in advance for your concern. It is much appreciated!!

xx Rowena

 

 

Forgiving the Unforgivable.

What if you were called on to forgive something you can’t see, can’t touch yet it stalks you 24/7 year after year after year, never releasing its grasp?

Welcome to my blessing and my curse.

Dermatomyositis is a severe, systemic auto-immune disease where your muscles attack themselves and self-destruct. It also, as the name suggests, attacks your skin and can also cause fibrosis in your lungs. Treatment is available but can be tricky. My case is considered severe and has been somewhat resistant to treatment but I’m lucky that my doctors keep plucking rabbits out of their hat, coming up with something new. I have been in remission for 2 years and am currently doing very well for me.

Newton Family & bilbo

A family photo with Bilbo as a pup Mother’s Day, 2007. This was taken 6 months before my diagnosis when I was already quite ill.

As I said, dermatomyositis is my blessing and my curse.

My blessing because most of the time I live my life to the very fullest appreciating each and every moment. I know life is short. Although I get sidetracked probably more than most, I do know what matters most to me and I do try to put these people first. Not always successfully but I love my family and my friends but I also love my writing, photography and helping others.

This, I’m sure you’ll agree, it’s a complex balancing act. However, dermatomyositis doesn’t understand love, relationships, priorities dream or goals. It just stampedes over the lot of it and when it flares up, even the best time management in the world, can’t save you.

Rowena

Getting my infusion in the brand new hospital.

Hence, it’s my curse. Almost since the birth of my daughter, I’ve been haunted by dermatomyositis and we are actually surprised but exceptionally grateful that I’m still here. I can’t tell you how heartbreaking it is to have your two year old son look up at you with his huge blue eyes and blond curls and ask: “Mummy better?” Worse than that, I couldn’t answer him. We didn’t know. To fall at home and knock your 16 month old toddler over on your way down but not being able to reach her and also to strangely to find that you can’t get up again yourself, is perplexing at best. What on earth was going on? In the end, my husband was carrying our sleeping daughter off my lap and into her cot. He even had to help me get dressed and cover me with my dooner each night. My parents were stepping in more and more to look after our kids and even me… their 35 year old daughter!

Rowena skiing downhill Fri

Skiing down the mountain at Perisher in August 2013.

It’s hard to believe that the same person who has subsequently developed a love of adventure  (albeit within my limitations) was ever so sick. Or, is still affected by this snoring giant which is kept under control through medication. I have been left with 60% lung capacity and some mobility issues but these are no match for my iron will. I am incredibly determined and have the best inspiration in the world…my family, my friends, my writing and my life.

DSC_9437

Sailing this week.

That said, I am lucky there is treatment. No amount of determination can help you beat a disease without treatment.

The life I am living is good, even if it isn’t anything like what I’d planned or expected.

I could focus on all that I’ve lost but going down that path, really is the road to ruin…just like unforgiveness.

amelia heart painting

We have more choice in how we paint our own picture than I ever thought possible.

Seizing hold of all the good in the life I have now…this is the road to happiness. Do we call it forgiveness? Acceptance? I don’t know but whatever you call it, it certainly took me a long time to get here. I was diagnosed with dermatomyositis 9 years ago and I certainly didn’t reach this point overnight. I was angry and didn’t know who or what to blame. God? Bad luck? Genetics? Indeed, it was only after I had chemo 2 years ago almost to the day, that I have let it all go and finally learned what it means to be a human BEING…not just a HUMAN DOING.

I still haven’t got it down to a fine art nor do I have all the answers. However, I’ve made radical progress possibly through letting go. I had to walk away from my job a few years ago but I am now at the point where I’m about to step out there again.I’m yet to work out where I’m going or how. However, that can wait. My kids are starting new schools next week and for the next few months, I make no apologies for putting my kids first. The rest can wait.

So, how have I been able to forgive dermatomyositis and move forward?

Fight back and don’t be a victim. This means doing what I can to give myself the best chance of managing the disease and trying not to make things worse. This also means taking responsibility for my health and not delegating my life to anyone else. I take my medication. Have regular blood tests. Exercise. Could eat better but could eat worse.

Have fun. Enjoy!

Extend my limits. If you can’t go through the front door, how about trying the side door? Think laterally and be resourceful. It can be very easy to shrink inside your shell where it is warm and cosy but do you really want to live the rest of your life at half-mast?

Rowena Violin

Violin Concert 2015.

Everyone needs a reason to live. A reason to get up in the morning. A reason to go through all the tedious bits and pieces in life when the going gets tough, boring or too painful to go on. It doesn’t matter what that reason is but without that, how to you keep putting one foot in front of the other?

Find support. I’ve had considerable counselling over the years and that really helped. I had some training in mindfulness techniques which I really struggled to take on board at the time but probably use more than I realise. I also went on a low-dose anti-depressant during a serious setback a few years ago and stayed on them. I am looking at re-visiting this in the next few months. I’ve been on so many other drugs that I let it be but they’ve come down significantly so it’s time for a review. My life is no longer hanging on by a thread.

Find a way of releasing your anger. I have written journal after journal burning off angst, deep sorrow, anger and anxiety throughout this journey and it’s really helped…both through venting and also being able to look back and see how far I’ve progressed.

Get out of your box. Sitting at home alone, it’s too easy to feel sorry for yourself and focus too much on how things how gone wrong for you. However, you only need to step outside your front door to realise that everyone has their lot…the blessings and their curse. You are not the only one. Even if you have a rare disease like me, there are still people in the same boat. For me, that’s either other parents battling health issues or others fighting different auto-immune diseases. I am far from being alone.

Most of us know if our glass is half-empty or half full. If you’re a pessimist, you’ll probably need to work harder to maintain your equilibrium. Write down something to be grateful for everyday…your What Went Well or WWW Book. Focus on that instead of the bad stuff.

Help someone else. Helping someone else has been shown to do wonders for your mood.

I have always seen dermatomyositis and a separate being, not “me” or even a part of myself. This means I haven’t internalised it. I am still myself.

Watch your language. Never call yourself a “sufferer”. I don’t have dermatomyositis. I am living with it. It might have moved into my body but it hasn’t taken over my soul.

 

Before I head off, I just wanted to address forgiveness when it’s someone you love who is living with a chronic illness or disability, which is a very different experience from being the person directly affected.

From my experience, it’s much harder for those around me to separate me from the disease. So, when I’m too tired to listen, be attentive, play, join in or can’t go bushwalking, go to the shops or invite friends over, they don’t usually see dermatomyositis. It’s more a case of Mummy being asleep again. Mummy can’t be bothered or…Mummy doesn’t love me.

After all, while I might have an over-abundance of words, don’t we all know actions speak louder than words!

So, I also have to forgive what can be a lack of understanding and compassion by those who I love the most at times. Deal with their anger and disappointment that Mummy is somewhat broken and there’s a gap between the concept of what a mother should be and reality. As my health goes up and down quite significantly, this can also be the contrast between well Mummy and sock Mummy. They don’t need to look any further afield to make that comparision.

When my kids are angry about things and playing up, they’re actually needing more love, not less and it’s not the time for me to retreat, which goes against any concept of self-preservation but that’s what it means to be a parent. Somehow, you need to be thick-skinned and thin-skinned all at the same time but who is immune to being hurt, especially by those you love the most?

This all brings me to this point. It doesn’t matter who or what is hurting you, you need to forgive and quite often this forgiveness is all about the little things. Overcoming the everyday. It’s less about that big one-off apology. It’s a daily thing. Just like breathing, eating, thinking, we forgive.

This post is part to the 1000 Voices Speak for Compassion. Please check out the link  to have your mind truly blown away by such personal journeys of grappling with forgiveness. Each month writers come together to post on compassion often within a theme. This month’s theme is forgiveness. 

xx Rowena

 

Lungs, Lunch and Violin…Just An Ordinary Day in Paradise.

Yesterday, Geoff and I drove down to Sydney for what turned out to be: lungs, lunch and violin.

Well, that’s quite an over-simplication. Or, what you could call: “the bare bones”.

Starting with the lungs…

Lungs

Every three months, I have routine lung function tests followed by an appointment with my lung specialist to monitor the spread of fibrosis in my lungs and to manage infection and any other lung nasties. While my lungs aren’t great and I have about 60% lung volume at the best of times, the fibrosis has been pretty stable for the last two years and I even get the odd improvement. So, these appointments aren’t all doom and gloom and we usually have a few laughs with my specialist.

However, there is no denying the reality of these appointments. My lungs are my weakest link and so we’re pretty much staring straight into the face of fear, eye-to-eye, without so much as a blink. We are probing the depths, trouble-shooting and coming up with a detailed defense strategy. This is very sensible and naturally the more you know about your enemy and yourself, the greater your chance of victory. However, at times, these conversations hit a nerve and it’s like plunging a knife in a very raw wound and it’s not surprising that I completely freak out and leap out of my skin. Who wouldn’t?!!

Although I’m tougher than I used to be and am somewhat resilient, I’m not made of stone. I crumble and fall apart just like anyone else and wish I could cry. Cry buckets of tears but the well has run dry.

The key outcome of this appointment is that I need to start dropping my prednisone further. This is supposedly good news. I keep telling myself this is good news. That means that I’m doing well. The disease is being managed and the risks posed by the medication outweigh the likelihood of the disease flaring up. This is what I want.

I can say that more than 24 hours later when the dust has settled. However, yesterday I was beyond terrified and wanted to boot some poor innocent hermit crab out of it’s shell and move in. Lock myself away and shut the door. Never come out. I really had to remind myself of all those things you need to do when your journey hits a snag and the wind goes out of your sails ie walk, get some sun, play my violin. EAT CHOCOLATE!!

We are now getting pretty close to that invisible line where the disease starts to reclaim lost ground and if it isn’t managed like the precarious house of cards that it is, I could literally come falling down. Have a flare. Of course, this possibility terrifies me and for good reason and I feel like I’m about to drive a car over the edge of a very steep cliff and the waves down below are just waiting to wrap around me. Pull me under.

I don’t know how likely it is to go pear-shaped but my doctors seem reasonably confident. This would suggest that all my flapping around is mere “catastrophising”, even though I still see it as healthy self-preservation. I should be right dropping 1-2mg gradually over a few months but then the real test is on. They’re trying to get me down to 5mg. At this point, I’m very inclined to quote Darryl Kerrigan from the classic Australian movie: The Castle:

But sometimes, you need other people to have a bit of faith in what you can do and what is possible. Sometimes, you need that outside reminder and jolt that your dreams really can come true.

So, it seems, I have to swallow my own medicine and take a deep breath and swing from the chandelier!

However, our day was not all doom and gloom!

Lunch!

After dealing with the lung monster, Geoff and I headed down to Sydney Harbour for lunch at The Kirribilli Club in Lavender Bay. This was the perfect antidote. I chose this place due to its sweeping views over Lavender Bay, Luna Park and the back of the Sydney Harbour Bridge. We could see the planes coming in to land in the distance and the ferries chugging their way through the harbour to places like Manly, Balmain and Kirribilli. It was so incredibly relaxing and the perfect antidote for a stressful morning. I still felt agitated inside, way too much like a churning washing machine but I could also feel that calming salve mounting a counter-offensive and could almost relax. Watching the water is so good for that and so incredibly therapeutic!

By the way, I should mention that it was unseasonably cold and the wind was whirling around, slapping us in the face. Yes, it hurt!

I was mighty glad I hadn’t got around to packing up my Winter clothes because woollens are back on. Indeed, where are my thermals?

After lunch, we went up to my parents’ place to pick up the kids and have dinner.

My beloved violin.

My beloved violin.

Violin

I’d packed my violin and decided to have a bit of a jam with my Mum who is an accomplished pianist. She’s taught the piano for many years and now that she’s retired, plays in The Lyric Trio with a singer, clarinet and her on piano. They play at Nursing Homes and retirement Villages, pretty much out o the kindness of their hearts.

Playing with my Mum was a huge step for me. While it sounds simple and natural enough, I’ve only been playing for 3 years and for the last 12 months, I’ve been struggling to keep up with my practice, especially given the ups and down with my health. The violin is a very demanding instrument and it’s not easy for anyone to develop good bowing techniques and get those awkward, uncooperative fingers to behave and find exactly the right spot every time. When you mix these difficulties with someone else playing the  piano, my mistakes become horribly magnified…especially to a trained ear!! These mistakes aren’t anywhere near as fatal when I’m playing alone. Sure, I know it doesn’t quite sound right but there isn’t that discordant clang, which is almost as painful as fingernails scraped down a chalkboard.

Just to exacerbate my violin battles even further, my bifocals were struggling to read the notes and I was making more and more mistakes. This infuriates me, of course, these mistakes aren’t “me”. Or, at least, not a true reflection on my playing.

I’m sure I can hear you pondering about me and the bifocals and wondering  how they fit in since I don’t wear glasses but is a sin of omission ie taking my glasses off for photos really such an unforgivable sin?

I think I’ve just stumbled into another post.

xx Rowena

Loving the Misunderstood: When Our Kids Hurt.

Yesterday, I had two kids home from school. Mister had a cold, sore throat and could barely keep his eyes open and Miss had been wiped out by too many late nights along with a cold.

While you’d expect sick children would by definition be too rundown to engage in mortal combat, you’d be surprised! In their weakened states, they almost killed each other, trashed the house and were absolutely obnoxious!! At my wits end, I rang my husband at work and asked him to come home. After all, I’d been up most of the night with a dreadful cough and all this coughing has left me with dreadful backache. I mean, if ever there was a case where Mary Poppins needed to fly in with magic umbrella, this was it.

It is the first time in longer than I can remember that I actually asked Geoff to come home but when he reminded me that he was two hours away and in the middle of touring a construction site hard hat and all, I took a deep breath and decided to “mum up”. Surely, I could mount an effective counter-attack and neutralise the little peoples? After all, as I am reminded, I am the adult. Surely, size and experience should be enough to combat youth, sleep-deprivation and impulsive thinking?

A little bit of green paint can go a very long way.

A little bit of green paint can go a very long way.

I don’t often write about the more negative aspects of my children on my blog because I don’t think it’s the right thing to do. While I might vent with a friend, it’s quite another thing to plaster their more dubious antics on the world wide web. I might as well stick up a billboard on the main street. That sort of thing is private, not public and children actually have rights to their privacy…even if a family member is in the media in any capacity. Too many writers exploit their children.

At the same time, I also don’t want to create the wrong impression. That just because they might look cute in the numerous photographic images I’ve plastered on my blog, that they’re perfect. Indeed, like all kids, they have an instinctive eye for mischief and a young and speedy mind and body to swoop into action before I’ve even sniffed trouble on the horizon.

Moreover, I don’t want to convey the impression that our kids just coast along having a Mum with a chronic life threatening disease and that there isn’t any fall out. Because there is.

At times, they really don’t cope and nor should they be expected to be okay all the time…just like the rest of us. They get angry. They get upset and not all of this manifests itself in what I’ll term: “socially unacceptable behavior” but is really a cry for help or at lest, a bit more attention. If adults struggle to survive in a pressure cooker, how can a child? Yes, we get on with it but there are times when the pot explodes and everything goes splat on the ceiling. We are anything but superhuman.

DSC_7944

While some children compensate for a sick parent by becoming overly protective and in effect little adults, my kids seem to react by running amok and regressing, sometimes quite significantly. So, instead of being helpful, they’re quite dependent and want and demand everything done for them. When this doesn’t happen, which is inevitably the case, there’s payback…anger, tears, screams.

You get the picture.

As you can imagine, when the kids erupt like this, things can get incredibly difficult, especially as this tends to happen when my health deteriorates and I’m least able to handle the meltdowns. To be perfectly honest, at these times, I wish I could just stick them inside an envelope, whack on a few stamps and post them somewhere else. I know that sounds bad but when you’re struggling to walk, breathe and essentially stay alive and you’re kids are going feral, what can you do? We have friends and family who help out but they can’t live your life. Moreover, although these meltdowns are very intense, they’re usually short and life soon returns to some kind of equilibrium.

Over the last few months, things have been brewing with our son. He’s seen stars and vomited. Had bad headaches. A dreadful asthma cough and really not looked very well either. He’s missed quite a lot of school.One morning when he couldn’t put his finger on his nose and was seeing stars, I took him off to Emergency. Nothing showed up and the vomiting stopped but he still hasn’t been himself. Then, yesterday, I found a tin of salmon with knife marks jabbed through it and it looked like it had been mauled by a shark with metal teeth. This precipitated a huge worry. Why couldn’t he just use a can opener like anybody else? Why doesn’t he know how to open up a can after helping out with cooking? He’s also a Scout. Now, I understand that scouting can make you more resourceful and inventive but surely a Scout can open up a tin by themselves?

One mauled and mutilated tin of salmon...none other than John West: the Best!

One mauled and mutilated tin of salmon…none other than John West: the Best!

I’m sure you can understand my concern!

Not only had he opened the tin with a knife but he’d also spilled the stinky fishy oil over the kitchen table when I was still sorting through cookbooks and a cookbook my grandmother had helped put together back in the 1950s had been smeared with the stuff.

I was livid.

You can also imagine after working so hard on the decluttering and kitchen renovations, that I was just a little bit precious and didn’t appreciate a tornado of a kid thrashing through the place.

But what can you do? Padlock all the cupboards? Lock him in his room? Lock myself in my room? You can also take your kid to a supposed expert but I’d already tried that and it was inconclusive. He is actually having some counseling about what’s been going on. You see, it’s not just me who’s been sick but his sister’s been in hospital and his aunty has cancer and Grandma was in hospital for tests yesterday as well.

As I said before, you can’t expect kids to cope any better than an adult when they’re submerged in “shit”. It’s to be expected that when a kid is hurting, they’re not going to be smooth sailing. More than likely, they’re going to bite the hand that feeds it and that’s not easy to take.

That said, we all have to get on with it. Keep going. When you’re living with a chronic ongoing situation, you can’t keep dropping your bundle and have any hope of getting anywhere. You have to keep fighting straight through that savage head wind and keep going. Surprisingly, this resistance actually builds you up and makes you stronger and we’re meant to take it on. We’re not designed to slump in a chair and give up. Yet, that doesn’t make the process “fun”.

Anyway, after more downs than ups during the afternoon and a few stern words from Dad who wasn’t happy being called at work or finding the house in such a state, Geoff had a chat with the Mister.

Geoff had Mister on his knee and started asking him questions and talking and eventually, the story tumbled out. Mister was worried that I was going to die. That having a chronic illness means that you’re dying.

Finally, we had something concrete, which made some sense.

It also turned out that he couldn’t get the can opener to work.

Mister spontaneously made a heart with his Incredible Hulk green hands. It really touched my heart!

Mister spontaneously made a heart with his Incredible Hulk green hands. It really touched my heart!

As you could imagine, we’ve had many talks on this subject over the years with the kids. As my health is pretty precarious even though I’m currently in remission, I don’t lie to them and promise some rosy-coloured vision of the future…especially as we’re currently in Winter and a chest infection is the most likely thing to cause me grief. I had pneumonia two years ago and it almost got me so I know life is fragile but it’s like that for all of us. Anyone, could be run over by that proverbial bus and it’s all over in an instant. It’s just that we’re more conscious of the fact.

Mister’s relief was immediately evident, although he still had trouble sleeping last night. These are big concepts for anyone to process…especially a kid who really needs and is still dependent on his Mum. I’ve also heard that having a parent hanging in the balance like this can be worse than the actually loss of the parent. There’s that omnipresent shadow. The knife hanging above my head. The boogey man, in the form of my illness, is always there making faces and scaring us. Yet, as close as it’s been, I am still a few steps ahead. Indeed at the moment, aside from the cough, I’m doing very well. However, the kids aren’t always in synch with my health status and can pick up on some random thing we’d never considered and react, leaving us wondering why they’ve lost the plot.

Also, in addition to living with my health issues, they also have the normal everyday issues kids have, although these can also get magnified when they’re not handling things well.

So, when you see my children mucking up, or other kids for that matter, instead of judging them or their parents’ disciplinary enforcement, perhaps you could ask a couple of simple questions:

Are you okay?

What can I do to help?

Another good idea is to run through all the people they can turn to for support. They can draw a hand on a piece of paper and write those name on each finger. Having a list of contacts on the fridge can also be helpful. Our kids really don’t seem to know important contact numbers other than 000 (our emergency number).

I’ve jotted down a few things here which have helped us get through those really tough times. They’re not an instant fix but over time have helped them and me.

Suggestions for Helping Kids Get Through a Rough Patch

• Some kids appreciate more physical contact such as hugs, sitting on your lap, holding your hand even though they might be older. Physical contact is a powerful way to convey love.

• Go for a walk or bike ride etc (exercise).

• Get a bit of sun. Sunlight helps you cheer up.

• Find a way to have a laugh. Laughter is known as the best medicine. A

• Play with a friend and or a pet.

• Write in a journal and/or draw some pictures.

• Listen to music.

• Having a break from the situation by going to a friend’s house or doing after school activities.

• Become an active member of an out of school community such as Scouts, Church etc where the kids can feel love and support beyond the family unit.

• Having an outlet for expressing anger such as drumming, jogging, boxing. Getting those emotions out is very cathartic.

• Talking regularly with kids about what is happening and keeping them updated. This is very easy to overlook and can be seen as protecting them but kids have good ears when you don’t want them to listen and it’s better to have a more structure conversation, rather than them picking up on bits and pieces and potentially getting the wrong idea.

• I haven’t been very good at this but meditation and slowing down anxious breathing is fantastic and helps keep a level head. The best way for me to do this is to go for a walk along the beach and focus on the water or by doing my photography. Focusing on a point is a relaxation technique.

In the meantime, if you know a kid who is going through a rough time and seemingly spiraling out of control, please don’t judge or condemn them. Perhaps, all they’ll need is a hug or a compassionate ear.

All our children need love, compassion…especially when they might “deserve” it least! Indeed, that’s when we need to push through the pain barrier with that desperate determination of a professional athlete and keep striving with everything we’ve got…including our community, which is so often right under our nose when we just have a look!

Our children, and especially our youth, are too precious to ever give up!

Love & Blessings,

Rowena

This photo was taken when I was on weekend leave from hospital back in 2007, when I was first diagnosed with dermatomyositis.

This photo was taken when I was on weekend leave from hospital back in 2007, when I was first diagnosed with dermatomyositis.

Quirky’s Quest for Connection.

I don’t know if anyone feels truly connected…as snug as a bug in a rug within the community blanket. As much as I would love to, sometimes even I find myself standing back quite content to watch from the sidelines lest I am somehow consumed or engulfed by the need or pressure to conform. After all, some of us don’t play by the rules and while this can be problematic, it can also be much of our appeal. After all, you can get a bit bored or sick of the same old same old.

Not all of us were designed to conform and toe the line.

Not all of us were designed to conform and toe the line.

Yet, being an extroverted social butterfly, I can’t help myself. As much as I might withdraw to write, I am soon back out into the social throng.

“The way a team plays as a whole determines its success. You may have the greatest bunch of individual stars in the world, but if they don’t play together, the club won’t be worth a dime.”

-Babe Ruth

That said, at times, connecting has been very difficult fore me due to my ongoing health issues. Having any kind of disability or chronic illness, can make it difficult to access certain places and events. It can make long excursions out of the house difficult. Moreover, when you are unstable on your feet and unwell and trying to communicate that with friends and loved ones when you appear perfectly fine, it is easy to start feeling disconnected. That you don’t belong. You can feel like crawling deep inside your “shell”, your “cave” and not coming out.

This is why I truly value and appreciate blogging because it somehow seems to bring together and unite all sorts of people…just like hundreds and thousands…into an online world which has quite different criterion for belonging. Yes, we too have our benchmarks and expectations but as long as you can write and read other blogs, you’ll fit in fine. Oh yes! You also need to have something to write about so you do need to be at least somewhat interesting or have some interesting stuff around you…or a good imagination! At least, in my experience people aren’t judging you by how you look. What you wear, age or other more superficial benchmarks. They are meeting you. Perhaps not all of you and I know that even though I probably come across as an open book, what you see here really is a thin edge of the wedge. After all, this is my blog not my journal and my husband and kids need to be respected.

In addition to blogging, I also stay connected with people who share my condition through an online Facebook community. I have never met most of these people in person and would only pop in on average about once a month but I do know they’re there and I have become personal Facebook friends with a few people from the forum who I’ve come to consider friends.

“Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart.”

-Marcus Aurelius

Our community faces some difficult challenges when it comes to staying connected. We all live with an auto-immune disease which falls under the umbrella of “myositis” and I have dermatomyositis. The incidence of myositis is rare at about 1 in 100,000 and living in Australia, I’m not swamped with “colleagues” and we’re geographically scattered and often immobile. This makes online forums an excellent way of becoming connected. Although being small in number, our group has been very keen to get the word out to promote Myositis in the community and to connect.

With this in mind, Wally Wombat was somehow conceived in the UK and came out to Australia via continental Europe to raise awareness. Wally is a small, blue stuffed toy wombat with a Union Jack around his neck and he has a red rose..a tribute to the girlfriend he left back in the UK.

Miss enjoying Easter breakfast with Wally.

Miss enjoying Easter breakfast with Wally.

Wally has been living with our family and I’ve taken him on quite a tour explaining who he is as we’ve moved around. Most people who know me know I have “something” but trying to expect anyone to remember the name “dermatomyositis” let alone what it’s about is a tall order. I know I’m very much speaking another language.

Wally had a close encounter with Lady.

Wally had a close encounter with Lady.

However, Wally opened many doors for me to share a quick blurb about myositis. Unfortunately, this probably isn’t going to put Myositis on the front page any time soon but perhaps it’s left an impression…an understanding or at the very least an appreciation of what it’s like to live with a rare condition…a “What????”

“Alone we can do so little; together we can do so much.”

-Helen Keller

I have written about Wally’s trip to the Sydney Opera House in more detail here: https://beyondtheflow.wordpress.com/2015/05/12/sydney-opera-house-new-perspectives/ So here are a few photos of Wally’s Rowena Tour and I’ll be giving you a spelling test at the end. That’s right! How do you spell dermatomyositis???!!

This post was written as part of 1000 Voices for Compassion, founded by Yvonne Spence and Lizzi Rogers. This month’s topic was “connection”. To read this month’s contributions click here for the link-up:http://new.inlinkz.com/view.php?id=527278

xx Rowena

Wally’s Rowena Tour

Wally seeking wisdom from an Aboriginal elder at Whale Beach.

Wally seeking wisdom from an Aboriginal elder at Whale Beach.

Wally sought help from the Force and consulted Yoda.

Wally sought help from the Force and consulted Yoda.

Wally was glad he wasn't a dog and did wonder about the scorch marks on the sign.

Wally was glad he wasn’t a dog and did wonder about the scorch marks on the sign.

Wally pictured with Alf from Homer & Away.

Wally pictured with Alf from Homer & Away.

Wally in Summer Bay, where Home & Away is filmed.

Wally in Summer Bay, where Home & Away is filmed.

Wally climbing the Opera House.

Wally climbing the Opera House.

Wally & I with the Sydney Harbour Bridge. Taken beside the Sydney Opera House.

Wally & I with the Sydney Harbour Bridge. Taken beside the Sydney Opera House.

Wally at the Lindeman's Estate in the Hunter Valley.

Wally at the Lindeman’s Estate in the Hunter Valley.

Wally flew in on a cup and saucer.

Wally flew in on a cup and saucer.

Wally catching the boat.

Wally catching the boat.

Wally was picked up by a magic carpet and has moved onto his next destination. He has been connecting people with myositis from all around the world together.

Wally was picked up by a magic carpet and has moved onto his next destination. He has been connecting people with myositis from all around the world together.