Wednesday, September 24, 2014

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.

Saturday, September 13, 2014

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.