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!!! 

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