The INEVITABLE

"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 day...in 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 face....how 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!!! 

Bring on being painfree!

"Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today" . - Thich Nhat Hanh

You remember that feeling you got as a kid before Christmas? That anticipation and excitement deep in your belly? The feeling of wanting time to speed up so you didn't have to wait for so long. Well that is what its been like for me counting down the days until I got my hip steroid injection. I guess for majority of you the thought of having a massive needle placed into a joint would seem like a worst nightmare but the truth was I was so looking forward to this procedure. Looking forward to being able to sleep through the night without excruciating pain, be able to walk without crutches, stop taking heavy duty painkillers and ultimately start living again!

Finally yesterday the day dawned upon me. Months had turned into weeks, weeks into days and days into hours. I felt like I had finally taken control back from this miserable pain. I wasn't due in at the hospital until 3.30pm so I had a long day ahead of me waiting. I was thankful that due to having had this done two times previously I knew what I was in for which made the waiting easier. There is nothing worse than anxiously waiting for a surgery. Arriving at the hospital things happened very quickly as I had been brought forward on the list. Because the injection is done in a theater room I am prepped like I'm having surgery. Due to my lupus my surgeon wants the most sterile clean conditions to lower the risk of infection. I am wheeled away to theater and checked over for the final time. My surgeon comes into pre-op and signs the final forms and marks my left leg. I am excited and its obvious  to all the nurses who seem to be confused with why I am so happy. One states I am a 'breath of fresh air'. My surgeon checks again that I do not want any sedatives. My reply "no I am absolutely fine!".

I am then wheeled into the operating theater and transferred onto the table. I always find it so strange to be awake at this time. The room has to be kept cold so I am piled with warm blankets. Before we begin my surgeon marks out vial arteries and nerves that he needs to stay away from.My hip area is then smothered in antiseptic and draped to prevent infection. A radiologist uses a fluoroscope to ensure my surgeon gets the needle inside my hip joint. First a local anasetic is injected into my hip to numb the area to reduce the pain. It more feels like a sharp scratch then a little big of stinging as the local is injected. Nothing too painful. Once the area is numb the needle is then inserted right into the hip joint. The surgeon then inserts contrast into the hip to ensure he is in the right place. Xrays will be taken during this time and sometimes the needle will have to be moved around slightly to find the right place. Once this is achieved the steroid is injected as well as some long lasting anesthetic  . This typically does not hurt but can feel like there is pressure building up in the joint. Then the needle is removed a sterile water proof dressing is placed on the injection site and you are done!! The injection its self does not take long more time is spent charting and prepping all the materials. Throughout the injection my surgeon talked me through what was happened and ensured I was being brave and coping well.

Needle in my hip being injected with contrast 

I was then transferred back to my bed and into post op where I had two sets of observations taken and then got to go back to my room. I was so thankfully I did not have to wake up from a general anesthetic as the guy next to be struggled with the nasty side effects. Thanks to the local anesthetic my hip felt great.   I spent about an hour and a half in the hospital before I was allowed home. On the way home I happily burst out with "Mum I can't feel my hip!!!". Relief sweet relief!  Last night I had to rest up and take it easy to allow the steroid to start to work. I had the best sleep which was incredible.

This morning my local anesthetic has worn off so my hip is a bit more achy. The steroid should start to kick in in the next few days. Here's hoping it wont take long. So for now I hope and pray that soon I truly will be pain free!!! I have so much living I want to do so please hip be nice.