At the end of the day sma isn't something that can be a quick fix, it's a debilitating illness that im going to be living with for the rest of my live and I just need to learn what my body can handle and learn to deal with the pain as it's probably never going to go away. After speaking to a beautiful sma warrior I've come to teams with that and I know what I need to do to help my body as much as I can, but I will aways live in pain and I just need to deal with that it sucks but it's life.
#smaswarrior #smaswarriorawareness #superiormesentericarterysyndrome

A few year's ago I posted this at the end of my SMA story, at that time I didn't know what really was to come.

I've been on a liquid diet for 2 weeks now, I'm not doing well at all, trying to avoid going into hospital every day has become my life day in day out, it's affecting mine and my family's life.

We were both forced to stop working. Ray was first 3 year's ago, he had to stop working to become Lilly's (our Autistic daughter who's unable to walk or talk and has huge behavioural problems) full time carer as I wasn't physically able to left her anymore or be alone with her by myself for to long without support.
I was planned on going full time I was training to become a duty manager at work and was doing so well until I hit a brickwall (that's what it felt like anyway) my health started going down hill, first I thought it was my back, but after being rushed to hospital countless amounts of times getting my gallbladder removed and many many many tests it felt long a life time being away from my family.

I finally found out I have a rear syndrome called Superior Mesenteric Artery Syndrome 0.013 % of people in the world have this horrible debilitating syndrome. We are warrior, fight every day to make this next day better, but some of us are really struggling.

As some of you may remember I had surgery in July 2017 Duodenojejunostomy open surgery to bypass my Superior Mesenteric Artery, if I knew then what I know now, I NEVER WOULD HAVE WENT THROUGH IT, everyone is different but unfortunately for me I am most likely suffering from scar tissue build ups (here's hoping) I'm waiting for an endoscopy in the next month to find out if this is the case or not.

But at the moment, I'm on a liquid diet, with no job,  no extra money coming in other then then our government benefits which we are so so grateful for, but it hard it so very hard the expense are building up and so to are the bills we are struggling so much and the stress is affecting our lives on way we NEVER imagined. Were good people Ray and I we just can't get a break.

My amazing man is doing an amazing job looking after us but, we stress ever day just wondering what the next day will bring. What amount of money we'll have to come up with just so I can live though the day, week and month it's so costly being so sick, I spend over $300 plus a month on Lactulose, Prunelax, Gaviscon, Iberogast, Panadol, Hydralyte, Buscopan, Metamucil, Lady's Multi Vitamin's, Hospital fomual Sustagen none of which are covered by the PBS it's all out of pocket costs that I need to live my life. I hate that I can't work to afford what I need to be able to live. So I'm putting my tail between my legs and asking for us help.