Not a sad story

"I'm going to make everything around me beautiful -that will be my life"  Elsie de Wolfe

I don't want my blog and my story to be one that makes others feel sad or sorry for me.
I don't want to be known as the 'sick girl'.
I don't want your pity.
I don't want that look of sympathy or the uncomfortable silence as you search for the right words to say.

Lupus is not my life; it's in my life but it does not make up who I am.
It has shaped me and changed me but I am so much more than simply an illness.

So who is the real Liv?

I have been blessed with 24 beautiful years on earth.
I am the girl who laughs a little to loud and a little too much.
I adore and treasure my family, my partner and my friends they are my whole world and complete me in every way.

Baking cupcakes and cakes makes me a little too excited.

Being in and by the water/sea instantly calms and puts me at peace. 

I love celebrations; birthdays, Christmas, weddings any reason to celebrate the good in life.
I have my mothers determination and cheekiness and my fathers focused and gentle personality traits.
My house is filled with quotes on the walls, photographs, butterflies and mismatch teacups and teapots.
I believe the greatest gift you can give someone is your time and smiles have the power to change someones day.
I am grateful for this moment right now, for the air I breathe, my heart that beats and my soul that is peaceful.
I crave that in the near future I will be able to work in the community and feel fulfilled and satisfied.
I dream of one day marrying my best friend and nothing makes my soul happier.
I pray for my own beautiful future family; to be able to care and love them as much as my mum and dad did for me.
I go to sleep at night knowing I am truly loved and am in love.

I am lucky; I am blessed and I am so thankful for this wonderful life!

Pain in my hip!

"You've got what it takes but it will take everything you've got"

Pain...a simple four letter word, easy to say, easy to spell and that's about where my list of positive things end about the word. If you type the word 'Pain" into Google it revels 814,000,000 results in 0.18 seconds. People all around the world are searching for answers to explain their pain but most importantly answers on how to escape it and make it go away. I think we all fear pain on some level- it's uncomfortable, frightening, foreign for most people and makes us lose control. The good news is most pain is acute meaning that it will hurt and be painful but it will pass. Chronic pain on the other hand has settled in, made itself at home and for the foreseeable future isn't budging from your body.

Intense, exhausting, miserable, cruel, nauseating, burning, suffocating, distressing, excruciating pain!

These are the words I would use to explain my left hip which has been an on going issue for a year and a half. It's the kind of pain every cell in your body screams out to. Every part of you desperately wants to escape from. It's a pain that has become way too familiar and frequent for my liking.

Things took a bad turn in March 2013 when after a lupus flare my pain became localised in my left hip. It was as if all the pain in my body suddenly went to this one area. I've lived with pain but never experienced pain this severe before in a joint. My rheumatologist sent me for an MRI to rule out Avascular Necrosis . A clear MRI came back leaving us with no answers. Which brings with it the self doubt - is this pain all in my head? There's nothing on the scan it must be fine? Why did nothing show?? My orthopedic surgeon decided to try an intraarticular cortisone injection which involves using an xray machine to guide the injection into the hip joint. There were two reasons to try this method: firstly to gain pain relief but also to see if the hip joint was the cause of my pain and not another area like my back. Once the local anesthetic was injected into my joint I gained IMMEDIATE relief which was heavenly. Thankfully my steroid injection worked perfectly as well and I thought my days of being in agonising hip pain were over. They were for about six months... Slowly but surely the pain returned and so did the crutches and the loss of ability to do the things I used to be able to do. Codeine turned into Tramadol which then turned into Morphine as I tried desperately to get this pain under control.

In February this year it was decided another steroid injection was needed. Again everything went well. I got instant relief from the local anesthetic and after a few days the cortisone started to kick in. By April the pain had returned! Like before I had started rebuilding my life and gaining independence again then it was all ripped away. That's where those silent tears at night come in. Please make it go again, please make it stop, I'm so tired of fighting this pain, please just leave me alone.

Lovely big needle in my hip during my second cortisone injection

Currently my medical teams are at a loss of what to do to treat me. My MRI's aren't showing anything conclusive. My scan is clear but my ability to function and live like a twenty three year old are completely irregular. I am getting by on a large dose of morphine mixed with stubbornness and perseverance. I refuse to let this be my long term future. Yesterday I got in a warm therapy pool and was able to walk freely which was the most heavenly experience. Water has always been a source of comfort and freedom for me. My heart ached when I had to get out and reach for my crutches and instantly the pain returned as weight was put through my hip. I wish I had fins! I wish I was a mermaid!

So now when my pain gets excruciating and I feel like I am going to be stuck like this forever I close my eyes and imagine myself walking pain free in the pool and think one day I will do this on land and I will cherish every beautiful step.

My Nanna Margie

I have stared at an empty blog post for the last week trying desperately to grasp at words and thoughts buzzing around my morphine induced brain fog. Trying to find the right words to say and perhaps not wanting to write this down because writing things down makes me have to acknowledge and absorb sentences which cause overwhelming sadness.   

Deep breath....our family has been grieving the loss of my mums mum, my precious Nanna Margie.A beautiful, graceful, humble, strong, determined and loving woman who I was so blessed to be able to call my Nanna. Nanna's health had slowly been deteriorating but when I got the news she had passed on August 13th it still hit me like a tonne of bricks. My mind flashed back to my childhood and remembered all the magical memories of my Nanna and the time we shared together. These memories now more so than ever have become my comfort. They are something I am going to keep close to my heart forever. A Nanna can never be replaced!

I am incredibly lucky to have had my Nanna to watch me grow up into the person I am today for twenty three years. She was always so proud of all her grandchildren and took such pride following our lives. My life is so much richer from having Nanna Margie in it. She taught me about the importance of family, especially about forgiveness and unconditional love. Nanna taught me to be strong; I'd always wondered where I got my strength and determination from and now I know whole heartily it was from Nanna. She battled her last few days with such grace and strength. A little woman which such a courageous heart. I adored everything about my Nanna. One day if I can be half the mother she was to her children and my mum is to us then I would have done something right. I know now Ill have an angel watching over me guiding me. 

As Sarah McLachlan's 'Angel' played and photos of Nannas life lit up the projector I was filled with both happiness and deep sadness. Happiness looking at the life she had lived; her beautiful smile which lit up the church, how proud she looked in the photos with her children, how as her life became more filled with family her heart grew bigger to accommodate us all. Nanna always looked happiest when she was surrounded by her family. Tears rolled down my cheeks as sadness took over my heart knowing that on this earth I am never going to see her again, feel her hugs, hear her voice. I am going to miss those things more than words describe. 

I imagine you in heaven Nanna, now with Grandad you are sitting around the table with your parents and all those you love in heaven. You have been in the kitchen all day, with no fear of falling over or getting breathless. Your joints don't ache and you are strong. Your hair has just been permed and you are wearing one of your favourite dresses. You dont feel the cold like you used to anymore.  You have just peeled all the vegetables from out of Grandads garden, made stuffing, gravy and broccoli and cheese sauce by hand. On the stove there is rhubarb, peaches, apricots and apples all stewing. You call everyone around for dinner and you all sit down to a golden perfectly cooked roast chicken with all the trimmings. Dessert is stewed fruit, custard and of course cream! You would be able to eat a big portion Nanna your throat can now swallow properly and food tastes sweeter and richer than ever before. This is what I picture your heaven being Nanna full of your favourite things nothing but love, joy and happiness. 

Rest in peace my Nanna Margie, I will be forever missing you. 
xxx

                     

Craving Life

Find a place inside where there's joy, and the joy will burn out the pain." - Joseph Campbell

I always thought when someone says they are 'craving' something it was food.
I wish right now I was craving 'chocolate' or 'ice cream' or even 'a sandwich filled with ham, jam, cheese and peanut butter'. I wish I was craving something I could physically pick up, devour and then feel satisfied.

But instead my body/mind/spirit my whole being is craving 'freedom from pain'.
A break away from pain, frustration, exhaustion, medication and limitations.

Right now this is my craving for the 'perfect day'. To wake up feeling rested, rejuvenated and fresh. Jump out of bed energised with no restrictions. To shower standing up, get changed in one go and eat breakfast with no effort. In my perfect world I would go off to my job as a social worker and be able to put my four long years of study to use. To sit around at lunchtime and talk with my colleagues about trivial things like how my partner left his towel on the bathroom floor this morning or complain how this new dress I brought didn't fit me anymore. Later I would return home from work put on my 'work out' clothes and go for a run around the block. I would then shower again and create a beautiful dinner that required multiple culinary techniques. Sit down eat dinner then do the dishes leaving my kitchen spotless. I would then finally curl up on the sofa and watch TV then head to bed where I would fall asleep immediately. This would then be repeated five times a week if I wanted to get really greedy!!

To most of you reading this I expect this sounds like your existence, the normal routine weekday. Give and take a few details! One that you often worry about that is 'too boring' or 'too routine'. But to me right now this is what my whole being craves. To have no pain and unlimited amount of energy is a concept my own brain cannot process currently at this time.

I don't like focusing on the negatives but the reality is this is my life at the moment and its hard and painful and every day is a struggle. Currently my biggest achievement is getting up and having a shower without having to go back to bed and sleep from sheer exhaustion. How do you accept that at age twenty three? Should you accept that?

Its frightening when the only relief you can get from the pain is morphine, when crutches become like a second pair of legs and you dread people asking you how you are because the reality is you don't know anymore. But each day you wake up and you fight, you strive to achieve something even if it is a shower. You look for beauty in life's simple pleasures; a hug from a loved one, a genuine smile, a cup of warm tea and the text from a friend who tells you she is thinking of you. The reality is now the small things matter in life and soon these little things will consume your life and help to block out the scary/ painful moments.

 Every day I still do have a choice; do I choose to focus on everything that I cant do, or do I look at all the things I still can do and all the blessings which are right under my nose?
Do I stay in bed in my pjs all day and let my body and mind be consumed by the relentless pain or do I force myself up even through tears to have that warm comforting shower and smile because I achieved something?
Do I focus on the physical pain or do I let emotions and feelings of love, happiness and peace flood my soul?

Every day there is a decision to be made and some days physically, mentally and emotionally no matter how much determination or drive I have my body will have the final say. I am learning to let that be

okay. To not compare myself to what other people my age are able to do because that only causes added pain. Instead to create my own little pieces of 'joy', to stop and smell the roses, put flowers in teapots and drink sweet tea out of beautiful china!

There is always joy some days you just have to stop and wait a bit longer to find it. 

Come on Lungs!

“Courage is not having the strength to go on; it is going on when you don't have the strength.”― Theodore Roosevelt 

You know have a chronic illness when all you have to say to a friend is 'guess where I ended up last night?' and they automatically know it was the hospital. Unlike most people my age my Friday night was spent in the Emergency Department. Music was substituted with groans and moans, the closest I got to alcohol was the swab on my arm before my blood test and dancing was replaced with watching my heart rate racing up and down to it's own beat.

Not long after my last post I noticed myself going downhill. My inhaler began to give me no relief and getting air into my lungs became exhausting. 'Liv you are okay!', 'Come on just breathe', 'Relax' no matter how much I tried to deny it I knew I was in trouble.

My parents had left that morning to visit my very sick Nanna six hours away. The thought dawned on me that for the first time in my life I was going to have to do this without them. A scary thought when your parents have been there through every hospital visit since the age of three. Honestly at the time I didn't even think about this thought I just knew I needed relief and to be able to breathe.

My partner Dan arrives home from work (he's a chef) to find me wheezing and struggling. I can only imagine how unsettling that must have been for him. The dreaded question was asked 'do you need to go to hospital?' My immediate answer was 'no!', although my lungs told a very different story. I did not want to go to hospital but the fact was i needed to go. That's the thing when you are chronically unwell you will continue to fight. You are so used to fighting to function that sometimes its not until someone else sees you that you realize how truly unwell you are.

As soon as I said yes my body breathed a sigh of relief, it was time to get help. Thankfully I only live about two minutes from the hospital so the ride there was quick but it was an anxious drive for Dan who gets around on his scooter not my car. Not the ideal time to have a driving lesson with your partner wheezing away, it raining and being pitch black. But he handled it so calmly and drove perfectly!

'Dan i'm scared!' 
'Its okay I'm here and I'm not going anywhere'

Thankfully at 1.30 am ED was very quiet and I was triaged quickly and taken to a bed where I received the works; an IV line, bloods tests, ECG and was hooked up to have my oxygen saturation levels and pulse continuously monitored. Due to being on beta blockers for having constant tachycardia (high heart rate) the nurse was concerned about giving me a nebuliser without seeing the doctor first. Nebulisers often make your heart rate increase. So the wait began....thankfully as hard as it was to breathe my observations showed my oxygen levels were stable.

As time ticked by though I began to get tired of struggling to keep up with my breathing. Dan became worried when my heart rate began to rise 120, 130, 135, 140, my body had had enough. The nurse came and gave the some oxygen to help and went and found the doctor. One look at me and a listen to my lungs and next thing I know I'm hooked up to a nebuliser to relax and open up my airways. After two nebulisers breathing was a lot easier and my wheeze had diminished. The doctor returned with a smile on his face stating I looked and sounded a lot better and that I had him worried. Finally at 6.30am I was stable and able to return home to my own bed for a much needed sleep.

My lungs have still decided to play up and on Monday ended up at my doctors needing two nebulisers again and narrowly avoided having to go back to hospital. The fight continues....but I am extremely blessed to have someone there who will hold my hand, wipe away my tears and make me laugh no matter how hard things get. "Liv we will get through this together, your fight is my fight".

So we continue to fight....together!

Overachieving body

“ As long as you are breathing there is more right with you than wrong

no matter how ill or hopeless you may feel.” (Kabat-Zinn)

The unfortunate fact of living with a chronic illness is that from time to time you will get 'normal person sick'. Of course my body seems to strive to out do itself and wont be happy with just the flu it needs added complications on top of it!

For the last three weeks now I have been battling a nasty virus that has invaded our family.When my family gets sick its a tiny insight for them into my world; the extreme exhaustion, body aches, headaches, nausea etc but the reality for them is they will get better. A tiny part of me feels slightly envious that after a week or two they will bounce back and life will continue on. Don't get me wrong I would NEVER wish illness upon my family but it does highlight for me how different my life is. Sickness is my normal!

The dreaded tickle in my throat turned into pounding headaches, blocked nose, sore ears, hot and cold sweats, body aches and a horrible cough. For two weeks this battle went on inside my body. Finally I thought my body had cleared it and I was free however things changed early this week.

On Monday I awoke unable to hear out of one ear. Great ear infection I thought! I struggled through the day with a lot of "pardons" and frustrated tears but mainly I hoped to avoid having to go to the doctors. That night I awoke at 3am with an unusual tightness and pain in my lungs. On a positive note my ear did feel better though! I managed to fall back  asleep and the realization kicked in that this was no longer something my body could battle by itself. A trip to the doctors was my next move!

 My doctor took one look at me and asked what was going on? I really feel for her as I am one complicated case. I explained how I was 'normal person sick' but its advanced into something else. No surprise my ear that was sore was filled with fluid but it was my chest that was more of a worry. Wheezing, rattling and spasming as I attempted to breathe in and out. Now normally my doctor would have put me on a nebuliser to open up my airways however due to me being on beta blockers and having trouble with a high heart rate it would have caused more problems. Instead she decided to try me on an inhaler and get the nurse to watch me and make sure my heart was okay. Thankfully my heart decided to behave itself and I tolerated the inhaler. I felt I could breathe a bit easier but my chest still sounded awful. So I was loaded up with an inhaler and spacer to take home as well as a increase of my steroids to 20mg to fight the inflammation.

It is now Friday and I am still feeling miserable. I struggled through last night with terrible wheezing but thankfully my inhalers offers some relief. At times it feels like I am breathing through a straw and cant get enough oxygen in which is an unsettling feeling. I feel for my poor body but I have to keep reminding myself it is doing its best and it is not purposely punishing me. Its fighting so hard so my job is to give it as much rest, fluids, medicine and love as it needs. Things will get better but for now its one wheezy breath at a time.

Hope (Hold on Pain Ends)

I wrote the below piece last year during a particularly difficult flare. Its an insight into what my reality can truly be like. It is also published on the Arthritis New Zealand website which was such an honor.

When I close my eyes I envision a vibrant, fair skinned twenty two year old woman.  A woman with blonde hair, sparkly bright blue eyes, an unforgettable warm beaming smile. She is dressed in a colourful dress. She is the kind of girl every girl wants to be. Loved by all, always smiling and has this tremendous ability to fight adversity.

When I open my eyes I see a pale faced twenty two year old. A woman who has battled and fought for survival since the tender age of three. Her eyes are red and puffy from the tears that won’t stop falling. Her eyes closed off to the world, closed tight to hide the pain. Her once prominent smile has dissolved into gritted teeth. Her breath is shallow and fast. Her face round and puffy from the increase of prednisone. Her hands shake her heart races as she looks down at her once functioning body. She struggles to straighten her hands. The sight of her finger joints being stretched and pulled out of place from years of tortures’ pain. Fingers that should be straight are bent at sickly angles. Perhaps the hands of a 90 year old lady? Surly not a 22 year old? The next unsightly joint is the 18cm scar on her knee. Perhaps from a shark bite? Surly not damage done by her own body!

Pain is everyone’s nightmare but what happens when pain is your every day companion?

Pain is what happens when she attempts to get up from her bed. Her wrists and fingers ache as she pushes herself up. Her hips scream out when they are swung over the bed. Next comes a great big breath – a breath to psych herself up. The chants begin in her head ‘you can do this’ ‘BREATHE’ ‘as soon as you have done this you can come back to bed’. She reaches down and grabs her crutches. On the count of three she uses the quickly vanishing energy to get to her feet. The room becomes dizzy as she catches her breath. Pain searing through her joints. It takes every bit of strength not to collapse back down onto the bed. The next step is the so called ‘normal’ ability to walk. Crutches first then legs. She hears a noise only to realise it was her own grimace. Finally the bathroom is in sight. The thought of continuing out to the lounge is too distressing so her body crumples back into bed. Body shaking from the pain. Maybe tomorrow will be better? But what happens when tomorrow hasn’t come and your spirit becomes weak and the fight becomes too much. There is no magic drug, no button to push to eject yourself from your body.

Emotionally she is hurting just as much. Life has been flipped on its head and what control she once had is now taken over with pain medication and tears. It’s the tears that scare her. She knows things are bad when the tears start. When the image of her former self seems more like a memory than a reality. To her tears mean that Lupus has finally got to her. Lupus has broken her. Lupus is in total control. She is only a host now. She is filled with sickening anxiety. Every decision she now makes has the ability to cause even more pain. There is frustration, anger, disappointment and grief. But most of all she is scared. Scared of the power Lupus has. Its ability to cause such pain and distress. Such disability and despair. She is scared of the amount of medication she swallows daily to try receive some relief. She is scared about lupus upsetting those she loves. Her family and friends having to see her struggle.

Even through it all the tiny voice keeps telling her to hang onto hope.

Hope that the pain will decrease.

Hope that her mobility will return.

Hope the medication will provide relief.

Hope her smile will return.

But mainly hope that tomorrow will be better.