Monday, November 14, 2016


'I know this transition is painful,
but you're not falling apart; 
you're just falling into something different,
with a new capacity to be beautiful.'
William C Hannan

Do you remember the game Jenga you played as a child? The one with the wooden blocks that get stacked upon each other and the goal is to pull out a block without collapsing the entire tower. The tower starts out strong, solid and centered but as the game progresses the tower becomes unsteady, unstable and ultimately unable to stand on its own.

 I feel like my life currently resembles this game.

I have felt my tower collapse multiple times.   I have sat on the floor helplessly wondering how I am going to pick up the pieces yet again. I have been that little five year old who cries that its not fair that their tower collapsed. That I wasn't ready and that I want another turn! I have held my breath as a piece of me is removed and my whole equilibrium shakes.

Will I hold it together or will I break and crumble?

Pain has been stacked upon pain, fatigue built upon fatigue. Sleepless nights, painkillers, limitations, frustrations make for a very unsteady tower. I open my eyes and wonder will my tower hold today, can I handle another pain filled day? Please just hold a little longer.

My tower collapsed over the last months, I have stared at my broken blocks on the floor and know that now is the time that I must rebuild. I must move forward. I can do this, I have done this many times before.

One block at a time, one breath at a time, one step at a time.

Rebuilding is scary...and confusing. How do I make the pieces fit back together? Should they fit back together? Do I need a new plan to ensure my tower has steady ground?

This rebuilding stage took a turn I wasn't quite prepared for. It was a tower that I had dreamed of but wasn't quite sure on how to build. I was offered a job...! Twelve hours a week; Monday, Wednesday and Friday from 9am-1pm. A job as a care and protection social worker at a wonderful agency where I completed my third year placement. I was to start the next week! Just like that everything changed.


I began placing my blocks on a steady foundation of rest, early nights, self care, medication and ensuring I was surrounded by my solid support system. We all knew this would be a challenge and it still is every single day but I knew I needed to try. Prayers, good thoughts and positive vibes were sent out that I would be able to cope.

It has felt amazing having a purpose away from my illness again. To be able to use all my years of hard study and apply them to practice. On the flip side it has been challenging. I have struggled with the fact that my mind goes 100 miles an hour and is so able but my poor body functions probably well under 50% currently. I get frustrated with myself (which I know is not helpful) when I cannot do what I need to. I will admit that currently every last bit of my strength is going into work and then I am left with not much else. My days off are spent sleeping and recovering...or attempting to.

I am telling myself I am rebuilding. We all must start somewhere and I am confident my body will adjust to this new routine. There is such a fine line between gently pushing my body and completely overdoing it. I need to be aware of this and focus on what I CAN do as opposed to what I cannot.

I saw my rheumatologist here last week and we have decided that it was time to start Methotrexate injections with the aim of me being able to lower my Prednisone (next blog post will talk about this more).

On Thursday I had a dull throbbing headache which I put down to over doing it. I awoke on Friday with it still there but went into work as I had a meeting. I get into work and was checking my emails when all of a sudden my eyes went all blurry and fuzzy. Then my head started pounding like nothing I had experienced before. I'll spare you the details but a stomach upset was then added into the mix. Cue Migraine time!! I found a quiet retreat in the play room on the couch where I curled up to close my eyes and hope that I still might be okay. No such luck. I was driven home where I spent the remainder of the day in my dark room with a flannel on my forehead. Surely sleep would make it go the evening I was still feeling unwell but the pain had eased a bit. I woke up the next morning feeling a little better. I thought it was over....only for it to kick in again with full force. Light and sounds were excruciating and my brain felt like it was throbbing in time with my heart beat. Another alarm bell went of when I was unable to hold down my medications.

Dan called Mum who immediately came down and took me to the emergency doctors. Leaving my dark room was extremely distressing as every move my brain felt like it might explode. I turned up at the doctors in a far from glamorous state. Mum wrapped around my arm, cold flannel to my face and a bowl under my other arm. Thankfully I was taken to a dark quiet room after mum asked the receptionist to turn down the radio.Waiting rooms are not migraine friendly.

I quivered on the bed willing the doctor to hurry up to give me something to help with the pain. After about an hours wait I was seen by the nurse and then the doctor. I muttered a few words and thankfully mum did the rest. I was prescribed an injection which went into my hip (I have no idea what it was!). Mum was told she had half an hour to get me home and then I would probably sleep for four hours. I remember coming home then I was out cold. Sleep was a heavenly escape. Once I woke up I managed some dinner then was back in bed by 8.30pm and slept soundly until 9.30am.

Yesterday I was left feeling very washed out. I felt weak and achy and just generally not myself. I still needed heavy painkillers and because I wasn't able to keep my medication down the day before my body was very sore. There was lots of sleeping and resting and trying to get comfortable. I was still light and sound sensitive. Just to add to the mix I had to inject myself with Methotrexate which I think was the easiest thing I had done all weekend then it was another early night...

Today I reluctantly stayed home from work to begin to rebuild my tower with rest, sleep, warm showers, warm cups of tea and time to allow my body to heal. If I had pushed to go to work today I would have added pain, fatigue and frustration to my already unsteady tower. My head is feeling a lot better and the light sensitivity is now gone. I am just left feeling physically and mentally drained.

What it all essentially comes down to is balance. Will this move make me stronger or will it throw me off balance.

The game continues......but for now it is time to rest this weary head.

I will continues to rebuild one block at a time.

Thursday, November 3, 2016

New hope

'There will be an answer...let it be,
Let it be, let it be, let it be, let it be
Whisper words of wisdom, let it be'
- The Beatles

I often like to compare living with a chronic illness to being on a constant roller coaster ride.
You go up and down, round and round; high highs where you feel untouchable and then of course the stomach turning lows. There is no denying the fact that the last six months have felt like my roller coster carriage has been hurtling downhill in what felt like a never ending tail spin. I wanted to pull on the emergency break. I wanted it to stop but all I could do was cling on for dear life and remember that we cannot travel downhill forever. There will be a break...there has to be. What goes down must go up...right?!

It has been a while since my last post and there are big updates ahead. I have come to understand that my blog will go quiet for two very different reasons:

1) I am physically too unwell to sit in front of a computer. The days when all my diminished energy needs to go into simple self care like making sure I eat, keep up with medication and sleeping. These are the days when I am fighting the hardest but words do not flow easily from my foggy brain. Survival mode.

2) Is when I get a window of respite from my pain and what do I do? I begin to rebuild, I begin to feel alive. These are my most treasured days and moments. Living mode.

Thankfully I can say that my blog has been quiet for reason...wait for it...2!

In order for this to make any sense I need to back track to the 20th of September. A day when a marvelous Rheumatologist was able to finally pull the emergency hand break and allow me a chance to catch my breath. I have come to understand that when you meet doctors and specialists pretty early on you can tell how the appointment is going to go. I was greeted with a warm smile, a steady handshake and instantly felt at ease. Dr M had a gentleness and calmness about him. He let me tell my story while he listened intently. I had his full undivided attention. He cared and I knew I was in safe hands. After an in-depth medical history and an examination of my joints he calmly said 'okay I have three option for you'. I let out a huge sigh of relief not realising that I had been anxiously holding my breath.

1) He explained that it was clear that Plaquenil was doing an excellent job of helping to control my symptoms but unfortunately that was now no longer safe for me to take it again. He suggesting keeping me on an anti-malarial medication but one that did not have the side effects of retinal toxicity. The medication he suggested is called Quinacrine. It's lovely side effect that I have to watch out for is yellow discoloration of my skin! That's a new one to add to the list of bizarre side effects. The only downside is that Quinacrine is not subsided by Pharmac so we have to pay for it ourselves each month. It is also no longer manufactured so therefore I have to get my own tablets made up at a compounding pharmacy. V.I.P status right there!!

2) The next option was to begin a medication called Baclofen to assist with the painful spasms I have been experiencing in my foot. Baclofen is prescribed as a muscle relaxant and anti-spasm agent.

3) Finally, as over the years I have reacted or gained no results from a majority of immune suppressants, Dr M suggested retrying Methotrexate. Last time I struggled on this medication due to side effects but if my memory serves me right I was able to reduce my steroids considerably. Prednisone is the only thing that seems to keep me stable which is far from ideal. At this stage I would rather sacrifice a day or two recovering from the side effects each week if the rest of the week my pain could be lessened. I say that now so if I start complaining of side effects please direct me back here!

I walked out of that appointment with a smile on my face. Finally there was a plan. I had answers and a new direction with my treatment. It was time for things to change.

On the 30th September I celebrated my twenty sixth birthday; I like to think this gave me new hope. I could close the chapter on being twenty five; reflect back to the wonderful blessing that this beautiful year gave me; our wonderful wedding being the highest on the list. I also felt that at the same time it was a chance to let go of all that pain and acknowledge that yes it was hard but I made it...I did it and now I have a new chapter to live. In a way it felt cleansing for me. It's not to say the pain isn't still there or somehow I am miraculously healed by turning 26 (I wish!) but for some reason it feels like a new start.

My final birthday present neatly wrapped up from Mum and Dad was my new medication Quinacrine  . We had to wait for it to be made and the day of my birthday the pharmist rang Mum to say it was ready to be picked up...if that wasn't a good sign I don't know what is. It sounds silly but I think that had to be my best birthday present (not that I didn't love and appreciate my other gifts :) )

The next day I swallowed my first little yellow pill (I can now see how your skin can turn yellow on these!!). I started with one a day for a week then increased up to two tablets once a day. As the weeks ticked by things began to change. I should also mention the incredible relief Baclofen was providing as more spasming foot.

With each neon yellow pill I swallowed I felt my body almost breathe a sigh of relief. The war inside my body felt like it was starting to ease. My bones didn't ache like they used to, morphine was switched for codeine and I spent more hours in a day awake rather than asleep. 

Each time a pill enters my mouth I feel my body growing stronger;I feel my smile growing wider and I feel my disease activity lowering. Yes these little perfect pills are working!
These pills hold hope for me; they hold the chance to flourish, thrive and to ultimately live! To be comfortable in my own skin. To begin to love my body again. To have some form of control over the pain.

I am in the process of rebuilding; rebuilding my body, my soul, rebuilding my life. It is exciting and terrifying at the same time. I need to trust; trust I am on the right path and that things will fall into place. Trust that I will be okay. Trust that this can work.

There is always a plan...always an answer, sometimes it just takes a heck of a long time to revel itself!  

Mum summed it up perfectly for me the other day. She said 'Liv it seems like you have some of your spark coming back' and for the first time I didn't have to lie because I truly felt it as well. 

It is early days but I cannot tell you how much I am treasuring these beautiful moments. I haven't introduced Methotrexate yet but see my specialist next week to talk about the possibility of adding it into my treatment plan. I have a long way to go I will admit that but for now I take immense comfort in knowing I have made progress and I am not stuck like I was previously. Hitting rock bottom is absolutely terrible and I would never wish it upon anyone but I tell you the ride back up is one of the most beautiful journeys you will ever take. Life looks a whole lot different on the ride up.

So here is to my spark continuing to grow brighter and stronger each and every day!!!