Goodbye 2014

The new year is here!!! And so is renewed hope!

When I reflect on the year that has been I've had some highs and many lows, and I survived. We all did. And how exciting is it to have a fresh chapter in our life book to rethink things, discover, prosper, & continue to hope and plan for the time ahead?!?!!!

When I look back on my 2014 experiences I do get a little saddened to think of what has been lost once again. At the new year of 2014 I had great plans to start over and get my health into a better state and most of all stay out of hospital. This didn't go as planned with another 8 month admission as an inpatient. This admission was tough but also hope filled. I had sepsis twice, septic shock once, my family were called to come in to the hospital because I was seriously ill, aseptic meningitis, cellulitis, PICC lines, port-a-caths, infections++ , countless loss of consciousness each day, injections, blood antibodies and plasma tranfusions of ivig and much more. It has been gruelling and tough for myself, my family and my medical team. But I feel we may have turned a corner.

With a new treatment approved to treat my nasty diagnosis things are looking better for the first time since i became unwell in 2010. When I started this year I was slowly climbing my improvement ladder until I got acutely unwell which then spiralled downwards and out of control. My Doctors predicted I would not be ready for discharge until November 2014, but this time I showed them and was discharged in August. Since then I have fought to continue to improve and make the most of this winning streak. These last few months I have been very unwell again but we have managed to pull through each time and not encounter any long inpatient stays, which is a huge win in my eyes.

This Christmas  and New Years were special. It was a beautiful yet quiet Christmas at home with my mum, dad and brother. Sadly for us, both my sisters are off around the world in Europe & Cambodia so we missed them dearly. This was the 2nd Christmas that I have been totally out of hospital since 2010. We had a delicious lunch and I somehow managed to sleep both before and after the food...pre-food coma maybe?? It was so nice to be home and spend the day how we wanted to which was low key and relaxing. 

New Years Eve was also so good. For the first time we went to watch the 9pm fireworks on the foreshore closest to our house. Mum packed us a picnic dinner & I stayed lying down most of the day so that I could last sitting in my chair for a few hours which worked well. It was a serene and family friendly environment. It was so easy which is something I never say these days. We watched the fireworks, my favourite oroton scarf got caught onto a sparkler spark and burnt a hole in it which sucked and then we went home & I was in bed by midnight to watch the Sydney fireworks display.

The year of 2014 was not easy. Everything came with a battle and left me exhausted and down. But as anyone else would, I picked myself up and kept pushing. I kept pushing because I deserve better and I am a determined brat. Now, looking at the last few months, my pushing won. I am physically the best I've been since 2010. I can sit for a few minutes unsupported, I'm doing more for myself everyday and I am pushing the boundaries with my family, physio's and OT in rehabilitation. 

I've got a lot of hope for this year. I'm not one to write a list or plan out dates/times but I do have an overall idea of how I'd like this year to go.

I want to stay out of hospital.

I want to eat healthy

I want to improve my health

I want to improved my physical abilities

I want to reduce my loss of consciousness 

I want to reduce my symptoms

I want to reduce some medications

I want to write my blog more regularly

And 

I want to start living again.

Although I'm sad that I lost most of my 2014 to poor health and recovery, it has also opened the door to improvement in my function with the new treatment. I don't expect things to be perfect and they probably won't be easy but 2015 I'm ready for you!!!! 

Operation 'Get My Life Back' continues...now!!!!!!!

Happy new year everyone!!!! 

xoxo