Sunday, September 25, 2016

The catalyst of my downfall

When you can't control what is happening, 
challenge yourself to control the way you respond to what is happening. 
That's where your power is! 

I vividly remember sitting in my ophthalmologist (eye doctor) office as he sat examining my latest eye scans. I had sat in this same room for the last twenty so years every six months. To say these appointments had become mundane was an understatement. The words that came out of his mouth next took me by surprise..."I see some changes to your eyes since your last scan, it is probably nothing to be worried about but I need to send you to Auckland to get some more thorougher tests, just to be on the safe side". My stomach sank, this usually was not the way my appointment went...a little taken back but in true Liv style I calmly asked a few questions was reassured not to worry and would be hearing from Greenlane Hospital with an appointment soon.

I think I need to back track to why I was even at this appointment in the first place. One of my Lupus medications called Plaquenil has a rare lets just restate that RARE  side effect of causing retinal (eye) toxicity. Plaquenil is known as a disease modifying anti-rheumatic drug (DMARDs) . Fun fact: its original purpose was/is used for treating malaria therefore is known as an anti-malarial medication. It is not clear why this medication works to help simmer down the disease activity of Lupus but is usually a standard treatment option for people who are diagnosed with the disease. Plaquenil has been referred to as a “lupus life insurance.” so in other words not a drug you particularly want to run into difficulty with. I had been on Plaquenil since I was first diagnosed so around about twenty two years. The longer you are on it the chances of your eyes becoming toxic does increase.

A month or so passed then on the 25th February Mum and I made the trip up to Auckland to get these specialised tests. Now I must confess anything to do with my eyes are my weakness. Put an IV line in me, inject me, heck I barely even flinched with I had a steroid injection into my hip socket but anything to do with my eyes for some funny reason makes me very anxious. When I was about five my eye doctor wrote in his notes that I had called the clinic the 'murder house'. I would cry when I had to have eye drops to dilute my eyes so we've always had this mutual understanding that he would do the testing without them. So stupid me gets on google and starts looking at the tests I have to have done and of course what does that do....further adds to my anxiety. Why do we do this to ourselves!?

Mum and I arrived at the appointment and I was sent to wait in a waiting room where I was the youngest by probably about 50 years...heck even Mum looked too young to be there! Then before I knew it the testing began. I started with the basic Field Test, an eye chart examine then I was taken up stairs for the one I was dreading an ERG and mfERG which looks at the functioning of the retina and macular. Thankfully I had the nicest doctor take my tests. To start with she put aesthetic drops in my eyes followed by more drops to dilute my pupils. Oh gosh even writing this my eyes are watering haha!! Then she placed these electrodes to the top of my forehead, sides of eyes and in the lower lids of my eyes. The anesthetic drops meant I could not feel this thankfully! Next I had to sit with my head resting into this TV like machine and watch an array of flicking lights and patterns for about 5 minutes. This was done twice as they were examining different parts of my eyes. Honest opinion it wasn't as bad as I built it up in my head.

I asked the question how common is it that you see Plaquenil toxicity...her reply "in my years of practice I've only seen a couple of cases". I felt a further relief of anxiety leave my body, I was going to be just fine. I was then taken down stairs for some final eye scans and was then free to go. Note....diluted eyes make for a very unpleasant experience! If you have this test remember your sunglasses!!

Smile or grimace?? 

I returned home and was focused on the wedding putting this test into the back of my mind. There was nothing I could do now but wait. But I was going to be fine...right?!

After the wedding and our honeymoon I had an appointment to go see my Ophthalmologist. I psyched myself up all ready to be prepared for whatever the outcome was going to be. I sit down ask about my results and he looks puzzled saying he had no results for me!! Nothing had come through...just great! In my head though I put this down to being good news. Surely if there was a problem I would have heard by now. I was told he would get his receptionist to see if there were any results and get back to me.

Weeks passed and I went to see my old GP who was back filling in and wanted to see how I was doing. We sat down started talking then she stated "So I guess you heard about your eyes?" My face told it! A letter had just come through and she had to break the news to me that my tests in Auckland revealed what we didn't eyes had become toxic from Plaquenil. Of course I had gone into this appointment not expecting this news at all. I was not prepared and most of all what does this mean for me now?

I remember driving home trying to hold back the tears but as soon as I saw Dan I just dissolved into a sobbing mess. Here I was thinking I was protecting my body from Lupus but yet the medication that was meant to be helping me had been the thing that was damaging me. I was barely over the flare from the wedding and now we were facing another unknown situation.

Rare side effect Liv it was a rare side effect but my body said challenge accepted!!

Let's look at the positive though because otherwise it just gets all too much. Thankfully it was caught early and I was asymptomatic and remain that way today. I was lucky I stayed vigilant with getting my eyes tests because if I didn't I could have been facing irreversible vision loss. Yes the situation was not ideal but it could have been a lot worse.

The major downfall for me was however that I would need to discontinue this drug and now would not be able to take it again. There was a big unknown about how my body would react without it and let's just end this blog post by saying...heck I miss that drug!! I had often wondered if it was doing anything and yes I learnt the hard way it really was doing something.

Just a little advice for anyone reading this and taking Plaquenil....please make sure you are getting your eyes tested regularly.  I know it can become tedious and I used to moan about having to get them done but it turns out these test were my saving grace. So please do not neglect your eyes! This post is not meant to scare you off taking it because I really still do think it is a wonderful medication and would still be taking it if I could. 

Saturday, September 17, 2016

Hold on to me

Hold, hold on, hold onto me

'Cause I'm a little unsteady

A little unsteady 

Written: 19/07/16

How much physical pain can one person handle? How much is too much? When does the brain decided to open up the flood gates and let out all that pain bottled up inside? How do you stop once you start? Why won’t this stop! I am so tired, I am so tired! Please pain stop!

My undoing was a glass of wine…
Or was it last night’s sleepless night due to unrelenting rib cage pain, that caused every breath to be excruciating? 
Or was it that the only relief I could gain from unbearable bone pain was morphine?
Or was it that I have been swallowed by this nasty flare for over three months?
Or was it simply that I had finally reached my limit?

I think deep down I knew these feelings were coming. How long can I survive physical pain before the emotional pain catches up to me? 

I am a bottler, I know this. From an early age I have had the mentality that this is my reality lets just deal with it. Lets look on the the bright side, be optimistic and everything will be okay. A lot of the time this does serve me well. I wouldn't survive without this positive outlook. My problem is I bottle for too long sometimes. I keep it all held inside and then become scared to let it out because my fear is maybe it wont stop. I bottle to protect myself and I bottle to protect those around me. Tonight the lid released...and the contents poured down my cheeks. 

I sit here tired….I sit here absolutely shattered. My soul is exhausted, my body is drained and my mind is numb. The only thoughts I can form over and over is ‘I am tired, I am tired I am so very tired’. It’s the kind of bone crushing fatigue that no amount of sleep will fix. The type of fatigue that even when I am lying down I feel like my body is going to collapse from under me. The type of fatigue where talking becomes a mammoth task and sometimes even breathing feels too exhausting. I wish I was just ‘tired’ but in reality it is so much more than that five letter word.

Tonight I sat in my quiet house and I finally let myself cry…I let myself sob. Cry out the physical pain, cry out the frustration, cry out the limitations and restrictions, cry out the life that I feel that I am missing out on. Just cry because I simply feel sad. I love my life don’t get me wrong I have so many blessings but right now it is just so damn hard. Pain is so cruel and overpowering.

Tonight I give myself permission to feel these emotions, to admit that I am struggling and to allow myself to cry because reality is that it is really miserable to be in a body full of pain. I need to allow myself to feel these emotions instead of blocking them out. It doesn’t mean I am not coping and it doesn’t mean that they will never stop. 

It is okay to cry Liv you are not failing anyone. Let that guard down!

Tomorrow I will pick myself up and I will keep fighting because even though my pain is unrelenting right now I know deep down in my soul I am that little bit tougher; that little bit more stubborn. There will always be a part of me that is stronger than this pain, even if at times it is only a tiny particle.  
I can allow myself to fall apart but I must pick myself back up.

For now Liv just rest, close your eyes and rest. You have been so brave and just like all those times before you will be okay!

Thursday, September 15, 2016


"You will not always be strong, but you can always be brave." Beau Taplin 

I think we all knew deep down that it was only a matter of time. Only a matter of time before the harsh reality of living with lupus caught up with me. We knew I would crash after the wedding but I can tell you we were not prepared for this next chapter. Our vows in sickness were soon put to the ultimate test... 

I cannot be thankful enough that my lupus went quiet and for once and played the game. Best wedding present ever!! Thank you Lupus!  I'm not actually sure if you purposely went quiet or I outsmarted you with a high dose of steroids but anyway I'll take the win.

I walked down the aisle and married the man of my dreams. I wore heals, I danced and I truly was pain free. But trust me Lupus you wouldn't have ruined my day even if you did want to be there. 

Again we left you behind in New Zealand as we headed to Rarotonga for our honey moon. Five blissful nights in island paradise!! It was the most beautiful and the perfect start to married life. We were on top of the world! 

Lupus, you tracked me down towards the last few days but thanks to painkillers, an understanding husband and a few too many rums I kept you at a distance. I could feel you starting to creep back in. I was not ready! In my head I begged with you to wait let me have one more pain free day to just be free to live. My ankles began to ache, my bones throbbed and I began to need to sleep during the the pit of my stomach I knew this was not a good sign. 

We knew you were coming and it was only a matter of time before you made your unwelcome appearance (yet again).  You took the sneaky opportunity of making your grand entrance once I began to taper down on my prednisone. Or was it once I stopped to finally relax back at home and settle into married life?...we will never know. 

I wasn't ready to have you back and as much as I fought it ultimately you did fight harder, you've always been good at that. You wear me down bit by bit. You take away my freedoms and the ability to make choices. I go into survival mode and you go into destruction mode and destruct me you did! You broke me! Days of uncontrollable pain took their toll on my body, mind and soul. It felt like I was being punished for all those days of being pain free. Like you were making up for lost time and now I was just your host. 

I finally broke on the 5th April (just fifteen days after returning home from our honeymoon) after a night of terrifying unrelenting pain that induced vomiting. I had nothing left! I remember ringing my poor mum in tears telling her I couldn't take it any more I simply could not do it. I needed help.  I was taken to my doctors office and by this stage dad had to push me in a wheel chair. I was one sick girl!! I no longer felt like me.  My doctor took one look at me and before I knew it I was in the Emergency Room then being admitted to hospital for pain relief and to be monitored. 

I cannot imagine how frightening it must have been for my parents and Dan. I remember mum physically having to hold me up to walk to the bathroom and being wheeled just down the hall for a chest X-ray because the pain was to unbearable and I was to weak to stand. 

Lupus you truly out did yourself I will give you that. Usually I would do everything in my power to be discharged and recover back home in my own bed but for the first time in my life when the doctor said he didn't feel comfortable sending me home I didn't try and bargain with him or plead to go home. I knew I was where I needed to be! 

Relief did come to me in the form of iv morphine though out the night. All I could do was lie there with my eyes closed and rest my weary body. I didn't fight you that night I didn't have anything left. I just let the morphine take effect and drift away. I had the most wonderful nurses who kept my pain under control through the night and would heat up heat packs to soothe my joints. 

The next morning my iv morphine was switched to tablet form and with the pain being under better control I was discharged in the afternoon. The next weeks were a haze of morphine induced sleepiness and a body still not able to function but I was thankful to at least be able to control these symptoms from the comfort of my own home. 

Oh how I look back now and wish that was all I was going to badly I want to type and they lived happily ever after without Lupus THE END....but the next chapter was just beginning and all we could do was cling to each other and keep searching for our little pockets of joy!! 

Welcome to married life chronic illness edition!!! 

Tuesday, September 13, 2016

To my husband on our wedding day

I am not sure if brides typically speak on their wedding day but as you probably know I wasn't exactly the traditional bride or one to follow the 'usual' way of doing things. For me personally it wouldn't have sat right with me if I didn't get up and say a few words (or a lot of words!!).

I wanted to include the final part of my part to Dan. It's safe to say this reduced a lot of people to tears and I spent the entire time reading off my piece of paper because i knew if I looked up there would be no returning to a composed state.

I went back and forth about whether or not to include my health battles in the speech but ultimately decided that it makes up a huge aspect of our relationship (whether we like it or not) and I felt by ignoring it I was not doing justice to the authenticity of our daily lives and the true strength of our love. It was real, honest and for me it perfectly captures the love I have for Dan. So here it is....

To my husband (oh my can't believe I can say that now). On our very first date together sitting in Starbucks nearly 8 years ago to this day you asked me to be your girlfriend I smiled down into my mocha and knew deep down in my heart I had found my soul mate. There was the way that from very early on and still to this day I feel safe and secure and comfortable with you. With you i feel like I am home. I could finally let my guard down and be myself. You loved me for me not front no act  just me. 

Today we vowed to love each other in sickness and in health but Dan I feel like you have taken this vow early and lived up to every precious word. I'm not going to lie we have faced some very tough and scary times together in relation to my health. I still vividly remember when I told you about my illness being worried that it might scare you off. But the words you said to me still bring me immense comfort today. You said 'that now we were two people fighting one illness and that I would never have to fight alone'. Dan that's when i knew you were the person for me.

 I think we like to imagine that love is this big gesture like we see in the movies but you want to know what true love is for me...its Dan rubbing my back while I wait for my pain medication to kick in, it's Dan heating up endless wheat bags to soothe my aching joints, it's him holding my hand while I nervously wait in yet another doctors room and it's him endlessly telling me that it's going to be okay even when he is scared . I'll tell you now that's a beautiful pure raw kind of love and that's the love I have with you. 

People often tell me that I'm the brave and strong one but hunny I think they have it wrong. In my eyes that is you. You selflessly give everything in your power to make me more comfortable. You are the true hero in this and I want to thank you from the bottom of my heart for choosing me to share your heart with.  You bring a whole new meaning to the word devotion. I still can't believe how lucky I got. Together we make each other better. 

Dan because of you I smile more,
because of you I have hope,
 because of you I am stronger 
And because of you I finally feel healthy. 

I love you Dan and I cannot wait to share every waking day showing you this. Here's to our happily ever after! 

Mr and Mrs (continued)

By this stage I am still pinching myself to check I am not dreaming. Already my day had been filled with so many blessings and I hadn't even walked down the aisle yet. It was real, this truly was happening and I was now so eager to walk down that aisle and see my soon to be husband.

I traveled in a car with Mum and Dad while Josy, Sam and Summer rode in another car. Dad sat in the back with me and held my hand the whole way. I remember by this stage it finally hit me that I was about to get married. Haha even writing this my heart starts beating faster thinking about this moment. I made a point to be on time and not leave poor Dan waiting at the alter for any longer than he had to.

Our ceremony was held at a place called Oak Valley Manor. A stunning garden surrounded by white roses and a precious little chapel (which was our wet weather back up). The weather played it parts and everyone prayers worked. All week we were scheduled for rain. I almost brought an umbrella and was mentally prepared it would rain. On the day before during our rehearsal there was no rain but it was incredibly windy which made it very unpleasant. Even when we woke up that morning it was still windy but just like magic it dropped away and we were left with a perfect day. The owners of the venue said that they had never had a wedding party have such a stunning still, clear day. We had lots of beautiful souls looking down on us helping in that department.

We arrived and our priest came over to greet me then we all joined hands and said a quick prayer which was a lovely gesture. It calmed us all down and gave us a minute to just breathe and center our thoughts. Then the music started and it was time...Dan later told me that although they couldn't see me they could all hear me laughing which sounds about right!!!

We had chosen to walk down the aisle to Jason Mraz 'I wont give up' we had it sung and played on an acoustic guitar by Dans family friends (Josie and Jimmy). Their voices were breath taking and the words to this song have always given me chills. For us as a couple that sound encapsulates standing by each other side through life challenges as well as the wonderful moments. It is about being each others pillar of strength and knowing that no matter what happens from this moment you will always have your number one supporter by your side. It is simply about not giving up...on our selves and on each other.

I had both my Dad and Mum walk me down the aisle. This was a decision made even before I was engaged. I always wanted both of them because I wouldn't be where I am today without them. I needed them both there to hold me and to take this special walk together. I think Mum mainly wanted to make sure I didn't fall over!!

 I distinctively remember firstly being overwhelmed with the instant amount of love I could feel walking down the aisle of all the happy smiling faces then I locked eyes on Dan and everyone else seemed to fade away. The first look at each other gives me chills. He was beaming and I knew I was beaming. After hugs from Mum and Dad I finally embraced Dan and I had never felt so perfectly placed in the world in that minute. Everything had been leading up to this minute and I tell you it felt so natural and overwhelming peaceful. I was finally where I was meant to be.

Dan and I were both brought up in the Catholic Church and attended Catholic high schools so faith was an important part of our wedding day. Our Priest who married us had had a lot to do with our families so having him marry us meant a lot.

We had our close friend Bex do a bible reading (Colossians 3:12-17). Which talks about clothing ourselves in compassion, kindness, humility, gentleness, patience and forgiveness  but "over all these put on love, open yourselves to lasting peace and be grateful".  In our eyes the formula for a deep rich blessed marriage. 

This is an insert of part of Father Craig's homily:

It's been said, and I think it's true, that good marriages, like good wine, take time to mature. You are both very young but you have already begun this journey in a way that many people will never achieve.

If there is any one word, which helps to define a good relationship it's love. The experience of being loved, no matter how old or how young you are, cannot be compared with anything else. No amount of money can buy it. Nothing can compare to the knowledge and experience of being loved just for who you are. Love is much more than a feeling but it gives us a feeling of wholeness. Love gives us a sense of our own worth and without it, we feel empty. 

Daniel and Olivia, you are being invited to hold on to what's good. You are already a light for our world. Let go of anything that will harm your marriage and never stop being grateful for one another. I encourage you to continue putting your trust in God who loves you deeply. He wants you to be truly happy and to enjoy his friendship. He will always be there for you but he wont force you.

 Lastly, our hope for you, as a family and friends and your wider church family is that you will be happy in your marriage and that your love for one another will deepen and grow richer all the days of your lives. 

It was then time for our vows and Dan and I could not stop smiling....make that beaming. I always thought I would be a blubbering mess but I just had this perfect calmness and serenity wash over me that every word I spoke to Dan came from the bottom of my heart. I looked into Dan's blue eyes and knew that for the rest of my life I was now home.

 I was told later again that once we were pronounced husband and wife I let out a big 'wooohoo' haha classy... and then Dan said he quickly joined it. I have no memory of that!
 We all knew what was next the awaited first kiss....which have to be two of my favourite photos.

We then lit our wedding candle which I had wrapped the bottom in the left over lace off my dress.  Dan's sister Tamsin, my brother Joe, my friend Jemma and cousin Tom all read out the Prayers of the Faithful. It was special to have our nearest and dearest included in this way. Then it was time to sign the register while Josie and Jimmy sung Ed Sheeran's Kiss Me....after seeing him live twice Ed had to be included in our wedding day!

 We had one more blessing and then were declared for the first time Mr and Mrs Hall!!! We walked back down the aisle to Imagine Dragons 'On Top of the World' which really doesn't need any explanation as to why we chose that song.

The next phase was filled with so many hugs and congratulations and more happy tears. I do not think I had ever been hugged so much in my life. It was then time for group and family photos then our bridal party and us slipped away to capture some beautiful photos. Our guests were left to mix and mingle in the garden with champagne and some amazing canapes (mini prawn rolls with wild rocket, lemon dill mayo; sushi with ginger and soy; rare beef fillet on brioche with smoked mushroom).

Below are some of our favourite photographs....Aimee Kelly is not only incredibly talented and passionate about her photography but was so much fun to shoot with. We really got lucky choosing her to capture our day. She was a true gem and has now given us special memories to cherish forever.

 We had our reception at a bowling club which the day before we decorated and it came up better than we could have imagined. We covered the tables in craft paper and then everyone had a paper doily place mat with their name which was written in calligraphy. We used an old suit case and luggage tags in craft paper as our table settings and on the table had wedding photographs of our parents and grandparents. Joe (my brother) had spent the last few weeks before the wedding planting succulents into vintage jars which were scattered around the table. Josy and my Aunty Pam had also done up flower arrangements in shades of green and white. Months before Mum and I spent our evenings making paper bunting and dear Bex had the patience of a saint and hand thread the doily bunting which we hung across the ceiling. We even had a cupcake table where people could ice and decorate their own cupcakes and take them away as favours or of course eat them right there.

If I had to describe our reception it was a labour of love.


 Talking about a labour of love our wedding cake was hand made by my fabulous relative Brenda. You only have to take one glance at the photo to see the detail work, time and effort that went into this cake. It was everything we had pictured plus so much more. A very special touch is the tea cup on top which was a set left to me by my late Nanna. This was my way of including her in our special day.

As Dan is a chef, food was his domain and it is safe to say the food was outstanding. We went with a buffet which meant our guests could choose what they wanted. Below is our menu...

Aged beef Sirloin with roast garlic and thyme crust.
Baked NZ Salmon Fillet with salsa Verde and hollandaise.
Lime and pepper berry chicken breast.

Balsamic roast Beetroot with marinated feta, basil and walnuts.
Sautéed green beans with roast garlic cherry toms and baked ricotta.
Gourmet potatoes with mint butter .

Wild rocket pear and parmesan salad with white balsamic dressing.
Avocado, cucumber and baby cos salad with chardonnay dressing.

Followed of course by dessert...
Baked white chocolate cheese cake
Vanilla and hazelnut Meringue with fresh berries and chocolate fudge sauce

Everything was cooked to perfection and I had one very happy husband and guests!! Mai Catering and Ryan you are highly recommended by us!!!

One of the highlights of our wedding (okay there were so many highlights but this was up there!) was our speeches. We laughed, teared up (cried!!), cringed and stepped back down memory lane as my dad, Dans mum, Josy, Jamie, myself and Dan all got up and spoke. Each speech was so different but perfectly captured the feelings and love they all had towards us.

After the speeches Dan and I slipped away for some sunset photos, cut our cake and finally had our first dance to Jack Johnson's Angel/Better Together. For the record we cannot dance haha!!
We had booked such a talented band called On Yer Bike which ironically played at our school ball where Dan and I won the 'Cutest Couple Award!'.

We danced away until 11pm till I could physically barely hold myself up and it was time to love and leave everyone and head back to our hotel.

I would have thought this day was all just a perfect dream until the next morning I woke up rolled over and was greeted to the words 'Good Morning my beautiful Wife!'