My Invisible Illness

As many of you would know, I have been unwell for some time. Well, I have a diagnosis. It's not great. It's something I have to live with for the rest of my life. It may be able to be managed with medication, but that won't stop it, just ease symptoms. 

A quick history. About 18 months or so ago I was sick. Turned out I had Ross River Fever. It's a nasty virus that knocks you for six! It left me so tired I could barely look after my girls, Muddled Hubby was having to have time off work. I ached from head to toe. It lasted about 4 weeks then gradually eased off. 

But I never really got "better". I never really bounced back. I have struggled with the lethargy ever since. I have had multiple blood tests that all said I was healthy. I fell pregnant, then miscarried. Then the aches started. My right hip first, then my left shoulder. Then in little random places. After about 6 weeks of my hip aching I went to my GP and told her about it. She sent me for tests, which all came back clear and we decided on a simple course of exercises, nurofen and heat/ice packs. 

It didn't help. Some days there would be no pain at all. Some days it was like I had never been sick. And some days, my hands would swell, my joints would ache, and my hip would be so painful I would walk with a very obvious limp. So I went back to my GP, and this time she decided to run bloods that looked at Auto Immune markers. I got a phone call almost immediately asking me to come back in. All the markers had come back positive. I had some sort of auto immune problem, but she wasn't sure which one. It was time to see a specialist.

I do not like specialists. They always cost a fortune. They talk a weird language. They judge every little thing you have and haven't done in your life. They have funny accents, and in my experience, was to do invasive procedures, which involve hospital and worse, needles. 

This specialist was, is, different. He didn't judge me. He didn't say lose weight and all will be well. He looked at my history, looked at my joints and listened to me. He sent me, of course, for more tests. Bloods, MRI, ultrasounds AND x-rays. He covered all bases.

Then he told me. I have Sjorgren's Syndrome. There are 2 types, Primary and Secondary. He told me only time will tell if it is one or the other. But, given my history, given my test results, he feels fairly sure it is Secondary. If that is the case, again, only time will tell what the Primary problem is.

Then I left his office with a pile of paper.....

My Hip, is so badly damaged. I have torn and eroded cartilage in between the femur and ball of the hip joint. There are several torn muscles around that hip joint too. Off to see an orthopedic surgeon, as the damage, that has been caused over a long period of time, is severe enough that surgery is probably the only option. At not even 40, I will need Hip Surgery and a long recovery time.

My shoulder has Bursitis. The fluid filled sac that aids in the movement of the tendons and cartilage around the joint is infected, and rather than moving smoothly over the joint, sticks & bunches up when my shoulder is used. That is causing the bursa to leak fluid and become infected. Back to radiology to have cortisone injections under ultrasound. (see!!! I told you!!! NEEDLES!!! And nasty ones too!)

Finally a referral to a physio. This will be life long. I have to learn exercises to strengthen and keep movement in my joints. How to protect them from future damage. And of course, to heal them now.

So on top of that, I get to continue to have lethargy for no obvious reason. I get to have randomly aching joints, swelling joints. I get to have dry skin, dry eyes, and eyes. 

Yes, I could lose weight, and yes that WILL help reduce the severity of the symptoms. This is complicated though, by the fact that I cannot exercise effectively and regularly. If I had willpower, do you honestly think I would choose to look like this?!! It is something that I am working on, my willpower, and something I won't give up on. And when I can exercise, I do! I have a gym membership, and I dont plan on giving that up any time soon! 

All this sounds pretty awful, all put together like that. And yet, if you looked at me on the street, you would think "overweight, sure, but otherwise normal and healthy". But I'm not. Every day I wake up, it takes my body up to an hour to get moving properly. Some days I AM normal, I feel great. Other days, like now, I feel like garbage. I feel exhausted. I hurt. I don't want to take pain killers during the day because they leave me like a zombie, but the alternative is to sit and deal with pain, which is exhausting. It is a silent illness, an invisible illness. 

I find now my PND, Depression and Anxiety is accepted, understood, more than ever before (convenient for me, given they are both well under control now!), but auto immune diseases, or invisible illnesses, they are not accepted. Do you honestly think the majority of people out there WANT to feel like this? That if it was a simple as getting up, moving more, taking some panadol, getting regular sleep, just "pushing through it", do you seriously not think most people would do that? It is not that simple. Sure, I don't doubt there are people out there who "fake it". Every disease, syndrome, every type of illness will have its crazy person faking it to get attention, to get sympathy, or whatever it is they seek. But MOST people? Most people would do ANYTHING to change their situation! I know I would, which is why I don't give up. 

I am still hopeful. I am grateful that there are treatment options available. These treatment options, should, in theory, relieve the symptoms, reducing the number and severity of the bad days. As the specialist said, I should be able to live a relatively normal life once the medication starts working. And so I am grateful for answers, for direction, for treatment plans, for HOPE.

I honestly believe God has let this fall on me for a reason. I do not believe he "gave" this to me to punish me, nor do I believe he just "let this happen". I believe this was meant to happen for a reason, whatever that reason is, I am along for the ride, my eyes open and waiting to see where my journey in Christ will go next. 

Do I like it? No. I feel useless. I feel helpless. I feel like a burden on my family, and especially on Muddled Hubby. He didn't marry this. I hate watching him work long hours then come home do the housework I should be doing. I hate not having the energy to give my kids with world and then some. 

But rather than wallow in the "poor me" pool, I choose to step up, face it with humour and a smile, and tackle it head on, determined to win. Sometimes I will fail, or fall down, but I can dust off. This will NOT beat me!

Melinda Grace Currie

Melinda Grace Currie.

Never have a met a little baby more wanted, more loved, more needed in this world than you. 

So for you to leave this world, so soon but so close, so unfairly, without even taking a breath of air....it just seems so.......wrong.

The day your Mummy told me she was pregnant, I was so excited! I was so thrilled that finally, after suffering and struggling so much when she lost your brother Jonathon, finally she was going to have a baby, her happy ending. Her beautiful precious rainbow baby.

And I was pregnant too. It made sense to us, it seemed destined, that we finally were going to travel this journey, the best worldly journey there is, together. Then at 10 weeks, I said goodbye to my baby, who I named Charlie. I was filled with grief, but I was ok. Knowing your Mummy was still safely carrying you. If anything made losing Charlie bearable, it was knowing I could dote on the little one growing safe and sound in my best friend.

Then, after telling me they wouldn't tell anyone whether their baby was a boy or girl, she let slip. She shared her momentary disappointment, knowing you were to be their last baby, that she wouldn't have a son, at least one here on earth. But, that never diminished the love she had for you. Cautious, sure, but still, so obvious and at all times overwhelming.

Excitement grew. I watched, from my long distance, as your Mummy blossomed. Grew to accept that God was in fact gifting her with another baby. We celebrated you with a Blessing Way, a gathering of those that already loved you, and were so excitedly counting down the days until we met you.

Then one morning, unexpectedly, I got a message "can't find heartbeat on doppler. Please pray, heading into hospital".

Instantly, my heart dropped. But I brushed it off. Bubba must just be sitting in a weird angle or something I thought. It can't be happening. I said a little prayer and messaged back, and then I got the message I never expected to see.

"No heartbeat on ctg or ultrasound. I can't believe this has happened again"

I couldn't believe it. Literally, I was beyond shocked. I cried. I screamed. I ranted. I sat quietly. I waited for the phone to ring, for the message sound to buzz saying, it's all a mistake, she is fine, and I am in labour. 

But it never came.

I went to work, but I couldn't do it. I couldn't handle people, I couldn't handle being "normal". How? How can life continue normally? How can people be shopping for stationary when this little babies life has been stopped short? Don't they know? Don't they understand the world has changed forever?

I did the only thing I could when I came home. I planned. I booked flights to go down. We had no money, but it didn't matter. Normally I hate to ask my Dad for money. I will do anything, sell all my belongings before asking for financial help. But there was no time for silly pride now. My Dad, also heartbroken, said if this is all he can do to help, he does it gladly.

Melinda Grace Currie, you arrived into this world at 8.45pm on Wednesday 17th July 2013. Your were born sleeping peacefully, and you were perfect.

I was angry. I was beyond heartbroken. And knowing how i felt was nothing compared to what my friends were feeling, that just made me feel worse. I could barely function through the next few days. I kept busy making arrangements to go to Melbourne for a week, organising kids, work, home. 

At night, when there was nothing left to do, when Muddled Hubby and the family were all asleep, and I couldn't sleep, I cried. I cried so many tears. I prayed, well actually, it was like yelling, to God. I begged, I bargained, I tried bartering, I accused. He performs so many miracles, why? Why couldn't He perform one now? How? How could he do this to them again? If she was going to be taken away, if that was Your plan, why wait til the very last second to do it? It is cruel, it is sick. I was so very mad at God. 

I arrived in Melbourne, and stayed for a week. It was emotionally exhausting, but I would not have been anywhere else. I felt useless, I felt unneeded. But what I felt didn't really matter. My friend needed me there, so I was. I was a presence, I was doing what I could to show I cared. I helped, practically, where I could. I did whatever I could with the limited resources I had.

I talked and spent time playing with your big sister, who, like you, I could not love anymore if you had been my children. I watched her swim (she is a fantastic swimmer!), I watched her play with other kids. I saw her moments of sadness, I saw the sadness cross her little face and my heart broke. I hugged her whenever I could. I watched her play with her Little Pony's and marveled at her imagination! 

I missed my family, and within a few days I realised, I can no longer do these things on my own. I was grieving. I was hurting, but I was trying to not let my friend see just how badly. She needed an emotional wall up to get through until the memorial, so I wasn't going to bring it down with my own grief. I went back to my motel room at night a cried, so much I had a constant migraine. Within days Muddled Hubby was organised to join me, as was another dear friend who was minding Mini Miss. With their support, I became stronger, and although my friends saw me cry, they never saw the raw depth of my grief. 

In hindsight, maybe I should have shared that rawness. Had I had more time, I probably would have.

On Thursday I met you. You were wrapped snugly and laying peacefully in a bassinet. You were so perfect. You looked like you were sleeping. It honestly took all I had in me not to pick you up and hug you, because I felt like, maybe I could will you awake. Surely you were just sleeping, and enough hugs, enough love, enough WILL, and you would wake up? Really, if your Mummy and Daddy couldn't will it with their love alone, then nothing I did was going to make a difference. So instead, I stood there. Tears rolling down my cheeks, soaking in every little detail I could see, your long eye lashes, your perfect little nose, your chubby cheeks that looked so rosy with life. Your little lips, so like your sisters they could almost be the same lips. I wanted to kiss you, to snuggle my face against yours. Instead I gently stroked your baby soft cheek gently. I wanted to hold you close and smell the new baby smell on you, but instead I stood there and promised with your mummy's closest friends, that I would love and protect and care for your mummy as best I could. Already, I have fallen short of that promise, although I will never give up trying.

Friday, your memorial day, it was really just a blur. There were so many tears, so many smiles, so many hugs. Your little coffin, so heartbreakingly small. No parent should ever have to look upon their childs coffin, so very tiny and small, and say goodbye. I honestly do not know how they did it, other than their love for you and faith in God was keeping them standing tall. 

And yet, through it all Melinda, that day did something to my heart. I was still so angry at God. In the 9 days that you had been gone, I had shut God out. I had turned on Him. I had basically said NO. If You can allow this to happen, this much pain and sorrow to afflict my friends, if You can take this innocent little life away so so close to being born, then You are not the God for me. 

Watching your Mummy and Daddy sing praise to God, despite all their pain and grief still so raw and overwhelming, they stood there are praised Him. My eyes were open. My heart was opened. And I sung, with all I had. I sang praise to God, in way I hadn't for a long time. I still hurt, I still grieved, but I no longer felt anger. It slipped away that day, and now, now my heart is God's in a new way. A more open and more honest way. 

Now I am at home. Life has continued. I still look after my family. I still clean my house. I still get up and go to work. I still struggle with money. I still struggle with life. I still struggle with illness. Through all of it, you are there Melinda. You, and your mummy and daddy and sister, are never far from my thoughts.

On the day you were born, a good online friend of mine also gave birth, to a beautiful healthy baby girl. Watching her grow through social media, is so painfully bittersweet. At first, I couldn't even look at her pictures. I would simply be overwhelmed with grief. Even now it is bittersweet. I can see that she is not you Melinda, and yet every time I see a picture, she is a reminder of what you should be, how you should be. I have come to love seeing these pictures of her though, she is a truly beautiful baby, and her family are blessed each day to be able to hold her close. 

When I walk through shopping centres, or when I am working and there is a new baby crying, it hurts. It hurts so much I tend to gasp quietly to myself. What should have been is thrust firmly once again into my mind. 

And I feel so useless. I feel unable to help. I hate being so far away. I am so grateful for the friends your Mummy has in Melbourne, but I am also, selfishly, jealous. They can not only express, but SHOW how they feel. They can be there, in person, remembering you, talking about you. They can do practical things to show love and care and support. They can hold your mummy when she cries. It is harder from this distance to do anything, although your Mummy, being the amazing woman that she is, is guiding ME, yes, guiding me, on how I can help HER! I have never been good with dealing with grief, but I hope I am learning.

And, and this will sound mean and selfish, but it is the truth, I miss my friend. I miss the person she was, the person I knew. That is not to say I don't still love her, because God knows I do. I miss the easy flowing conversations, the talking about mindless rubbish for hours on end and not realising the amount of time we had been talking. I miss laughing about something so random that anyone else would think we are weird. I wish I could simply heal her heart, put it back the way it was. 

But, at the same time, i would never wish that. Because that would be like saying I wish you Melinda, never existed, and that is a world I wouldn't even want to know. 

So rather than wishing for what was, I will now strive forward with your Mummy. I will hold her hand as she finds her way. To think she cannot be changed by you, that is just foolishness. To think that one day we won't laugh together again, that is foolishness. To think that one day we won't have mindless conversations about mindless rubbish again, that is foolishness. My friend has an enormous journey ahead of her, and I would never in a million years, let her walk that journey alone (not that she ever would). I still love her just as much as I did 2 months ago, a year ago, 5 years ago, and that is one thing that will never change. It is my turn the be one of the rocks in her storm.

Not a day goes by that I don't wish you were here. There are mornings when I wake, and think you are here, and wonder, for a brief moment how you and your Mummy are doing. Then I remember, you are an angel now, and it hurts. I think losing you, watching your Mummy and Daddy lose you, watching your sister struggle and come to terms with losing you, and all the sadness around her, that has hurt more than losing Charlie did. There was so much love and hope in you. I never realised that. You were supposed to be the healer for all of us, the promise that sometimes life DOES have happy endings.  

Melinda, you have already touched so many lives, so many hearts. You have put life into perspective for me. You have brought me closer to God.

But more importantly, you have given your Mummy and Daddy so much. They now know their place is in Melbourne. They have been swimming in a sea of uncertainty for so long. But you have shown them they have an amazing community around them, so many people who know and love them for who they are, and rightly so. You have shown them they have an amazing church that fosters their relationship with God. You have given them certainty where there was none. You have helped them find a home. You have shown your Mummy she has amazing friends down there who care for her as much as I, and so many friends who are far away, do. I just wish God had chosen an easier way to show them all this, and so much more. There is so much more you have done.

But I don't think you are done yet. I think there is so much more to do in your memory, in your honour. Lives will be changed, people will be restored in your memory. 

I will help keep your memory alive Melinda. I will talk about you, I will remind people about you. I will look at butterflies and rainbows and see not only God's love, but be reminded of you and how much you are loved. I will remember the milestones, the anniversaries, I will light a candle and say a prayer in your memory. 

Because Melinda Grace Currie, I love you.

Too often I make mistakes

So I have been pretty quiet of late. I have been trying to write blogs, light-hearted, fun, entertaining blogs, and they just won't happen. They won't flow right. There has been a reason. I write from the heart, I always have. I am, and always will be, an open book, because that is just who I am. If I am unhappy, you can tell. If I am happy, you can be damn sure you will know it. If I am struggling, you can tell. 

So because of that, the only way I can write a good, entertaining (i hope) blog, is by writing what my heart tells me to write. So, my blog may seem a little haphazard. Topics don't flow onto each other. I will write about Mini Miss one day, then a couple of days later I might post an organisation blog. No logic, just what is in my heart that wants to come out.

Since I set up my Facebook page linked with this blog I have been trying to change how I write. I've been trying to be more like the fun loving, heart warming, funny blogs I love to follow. I have been trying to write TO my audience.

Mistake number one.

Trying to be someone I am not, was never going to work. So, because I couldn't get the words to flow, I stopped writing. My audience, YOU, read my blog (I hope!!) because of how I write from the heart, not because its all fluffy and fun and full of insightful humour (although I hope when I write with my heart, occasionally I hit on that too!)

Mistake number two.

When I write, it helps me. It helps me deal with emotions I have no idea how to deal with. It gives words to things I cannot speak. I am a much better writer than I ever have been speaker. I hate speaking. I even find it hard to speak on the phone to my best friends!! These are women I have known for at least 13 years, and some a lot longer!!! It is crazy! But it is who I am.

If I have a fight with Muddled Hubby, I will write him a big long facebook personal message, even though he might be laying beside me, asked me a thousand times what is wrong and I have said nothing. It's not because I don't WANT to discuss it. Its just, when it involves so much emotion, so much of ME, I am no good with the putting words together into sentences and getting a message across stuff.

As a result of all of the above, I have hurt a much beloved best friend. I didn't write, because I felt I shouldn't. I didn't speak, because I didn't know how, I didn't know what to say, so along came the silence instead.

Mistake number 3.

I refuse to fall down and be a bad friend. Distance makes "being there" for someone so much harder. What I really want to do is move in, be there in presence, so she can see that I am hurting. That I am grieving. That I care. So I can do the practical stuff, so she knows, without the words, that I care. But I cannot. My life, inexplicably, cannot stop just because I want it to. Just because it feels like it should. I have responsibilities. I have a family, I have a church life, I have a job. 

So, I WILL write. I will write my story. I will express it, so my friend, my sister from another mother and mister, knows how much I care. How much I feel the loss too. 

So be forewarned, the next blog, will be straight from my heart. In all its rawness and all its ugliness and, hopefully, all its beauty. 

Because my friend, and her darling angel Melinda, they deserve that, at the very least. 

Fill The Gap Cambodia Auction

Next month I am running an auction to raise funds for a Sewing Training Centre in Kampong Cham Prison on my Facebook Page. 

One of the lovely ladies at my church has been working in Cambodia for several years now, working with the less fortunate, helping minister to many in the slums, the sick, the poor, and to inmates in prison. She has helped change the life of these inmates, raising the money and building a church for them, and she is now working towards building the training centre. You can read more about her journey in Camodia HERE and ALSO HERE.

Church Before

Church After

Many people have asked my why? Why should we help these people? They have obviously broken the law, they are obviously in jail for a reason, so why should we help them? 

“I was naked and you clothed Me, I was sick and you visited Me with help and ministering care, I was in prison and you came to see Me.”... ...“Truly I tell you, in so far as you did it for one of the least of these My brethren, you did it for Me.” (Mathew 25: 36 & 40)

This quote from the Bible tells us why, as Christians, we should step out and help those who so obviously need it. 

"I'm not a Christian" I hear you say, "so I don't have to do what some 2000 year old book tells me". You're right. You don't have to. Neither do I. Even as a Christian I can choose to turn a blind eye to the needs of the less fortunate. I can choose not to obey God. But I choose to obey, because that is my free will choice, I WANT to follow my Saviour. 

I choose to, because God has asked ME for a reason.

I was once an addict. I was addict to drugs, both illegal and prescription. I was not a nice person. I did stupid and reckless things. I could have lost everything, and almost did. I deserved to. Some of the things I did, I could have ended up in jail. It was a miracle that I didn't. I was blessed. Blessed with a supportive family, friends and understanding workplace. These women, they don't have that. Their families disown them because of the "dishonour" or they simply cannot afford to support them. Their friends don't want to know them anymore, and they rarely have the luxury of a job, let alone a job when they are released.

With the support of my family and friends I slowly turned my life around. Thanks to our Government, I was able to go back and re-train, get new valuable skills, and get a better job to provide for my family.

I was given a second chance.

And that is what this is really about. Giving these women the opportunities they need to turn their lives around. To give them their second chance. Their government provides minimal help. If families are unable or unwilling to provide for these women, then often they have nothing when they are released. No skills, no self esteem, no hope. 

I am not here to judge them, I am here to help raise some money to give them a chance. A chance to learn new skills that will get them work when they are released. 

Do I think everyone who utilises the facility will be forever changed? No. I am not naive. But, I do think that some will, and that makes it worthwhile. 

I have posted before, my church is involved with many projects, both in Australia and overseas. I help not only with this project, but with collecting much needed supplies for an Orphanage in the Philippines, I help with a local organisation helping the youth of Australia, Red Frogs. My point here is not to "toot my horn", but to say, I am doing what I can to make a difference in this world, one small cause at a time. 

So, you can CHOOSE, as God gave us free will, to help, to support, to make a difference to these women's lives. But you don't HAVE to.

Chicken and Vegetable Patties

So Mini Miss has become a bit of a fussy eater....

Apparently Mud Pies are a favourite!

No, really, she has become a ridiculously fussy eater. But only for us. For others she will eat whatever is put in front of her. Despite being very strict, rarely giving in to her demands, and offering a variety of healthy choices, Mini Miss STILL insists every single night that she wants "nuggets and chippies". (for the record, we do NOT feed her this meal very often at all, maybe once a month when we are out to dinner or on the run!)

So, in an attempt to get her to eat healthy, without her knowledge, I decided to start making her "nuggets" at home. I have been keen to make more healthy options for the whole family, so this is just the start of a series on healthy, easy, alternatives! 

Chicken and Vegetable Patties are my first attempt at hiding vegetables in her food. So far, so good. Most of the time she eats them. Most of the time. She is aware they are not actual nuggets, so sometimes this fails....So anyway, here is my very own recipe for them!

Chicken and Vegetable Patties

Ingredients

500 grams lean chicken mince 

2 carrots

1 large zucchini

1 parsnip

a handful of broccoli finely chopped

garlic and herb salt

1 egg

gluten free breadcrumbs (obviously don't have to be gluten free, they can be regular breadcrumbs, but in this house we try to avoid gluten as it turns out I have an intolerance, not Celiac Disease, just an intolerance, that can turn into the Celiac Disease if not careful)

Extra Virgin Olive Oil Spray

Method

1. Grate and finely chop vegetables

2. Mix mince and vegetables together (I do this by hand, messy, sticky, and gross but effective)

3. Add 1 egg (if needed) to bind mixture

4. Make small balls using about a tablespoon of the mince mixture, flatten slightly (or even shape them if you want to and have the time, which I didn't this time) and roll/cover in gluten free breadcrumbs

5. Heat fry pan and spray very lightly with olive oil, place as many patties as will fit into the pan, cook on a medium heat for 10-15 mins or until golden brown.

I cooked them all at once to save time, cooled and then froze them in individual serving sizes for mini miss to have when she is being fussy. Either defrost/reheat in the microwave or oven.

With 2 - 3 patties depending on size, i got 10 meals out of this mix. Well, 9, after Miss Teen came home, saw them cooling and ate a few!

Give them a go and let me know how you go!

This weekend I plan on doing a blog on Sandwich/Bread free Lunch box ideas. So many people ask me what I serve to my fussy kids, I thought I would share them. And if you want, I will share the recipes as well, so you can try them at home :)