Sunday, July 09, 2017

Life moments

Im so lucky i have 4 beautiful children each eqiue on their own. Beth is a such a wonderful cheeky girl always on the go. Making us smile. Whether it's putting my purfume on or watching kids tv. She makes our family complete. So glad she came into our lives. Since she has our bond as a family it strong just like their sibling love. Wyatt is  full on with smile to get his way. He can be very difficult at times but then there is moments when he is so loving and happy well behaved. Cooking with us the other day or being very useful actually wanting to help. Mione is so very much emotional. She can change in a heartbeat. She was spoilted more as a toddler with her speech problems but she is strong person. Always trying to get her way. She has a strong personality. Sometimes very bitchy already has a additude. She never thinks before she speaks or acts. She wonderful at caring. Byron is a lazy unmotivated boy with additude. He is a smartarse like his father. He is well like boy at school wonderful student. Always helpful. All of them different but same sometimes. It's such a wonderful job to be their mama im so proud of my children. I love doing craft cooking watching movies dancing parks being apart of their school life listening too them having family cuddles tickle wars colouring. I'm so lucky that they came in mylife it has made me a better person. Loving them unconditionally has giving me meaning to being a mama. They are the reason i get up everyday. I have the most outstanding caring loving husband. He loves me no matter what i look like. He loves my bad habits. Im so lucky to have in mylife standing next to me. I'm so proud of him and our marriage. We strong together and everyday we try to make each other happy and give each other what we need. If feels like we have been together forever.

Only downside of mylife is huntington's disease and everything to it destroys in its wake. Life is too short.

Saturday, May 20, 2017

My biggest dream

Cure huntington's disease

Trapped an alone

If feel like no one nos how i feel. How can they understand something i can explain. Is more than depression it my whole essences my brain is broken different. I doing my best but feel helpless. I'm off my depression tablets to find new ones. It's already a hard start to a long journey. I feel alone like no one can understand me. I try so hard too not be like my mum. Her mood swings were awful. I don't want my kids to see me that way but it's happening. I feel lost useless broken unworthy. I don't want to damage my kids. Sometimes even if im trying my best im not strong enough. I have no hope. There is no light at the end of my tunnel. My appointment with hd clinic is the 2nd june. Hopefully a mircle could happen but i highly doubt it. Since i was 16 i have tried so many depression tablets. Hopefully i can male it through the next few months. I hope my relationships will be fine. Its hard for the kids to understand why.

Praying for hd cure

With every family member that comes back with a postive my heart opens and prayers for a cure even more than before and i thought i wanted a cure heaps already. It's strange. It the 1st family member coming from testing for another generation.
My dearly heavenly Father ,
I pray for a hd cure soon. Please help us. Not just for my family but for the whole hd community around the world. Amen.

Sunday, May 07, 2017

Having a bad hd day

Life is going to quick. I feel like i don't have enough time left.

I couldn't stop crying this morning im so sick of having hd. It hurts all the time.
Most of all i hate my kids are going to have to go through hd shit them selfs.

My children

I hate thinking about what my children what to become for the career. What about if they achieve it then hd takes away their brains and they lost everything they whole dear. I hate huntington's disease has taken so much from me and now it's going to take so much from my children. We need a cure so bad so all the horrible oain will go away 

Monday, April 03, 2017

Australian government needs to wake up and help us hd families

Hd is slowly killing my brain. Sometimes hours are good but not many. I have 4 different kinds of days. Moods
1. Peachy happy can do anything( doesn't happen very often)
2. Ok but don't want too deal with the world. But will do what i have too.
3. Not ok can't deal with anything at all
4. Dark days happen often nothing is good. All i have bad thoughts. No hope and can't see myself. No control over my actions. My world is ripped apart.
My depression is a horrible thing. I have tried so many different depression tablets over the years. Just before i got pregnant with annabeth i was happy and on a tablet. I have stayed on that tablet for 3 years upping the dosage until i hit the max. It makes me really tired and doesn't help with my depression at all. Its not working and im too scared to go through all the crap to find another one so i stayed on it. I have no hope with depression tablets because I have had so much bad luck with them over the last 12+years. I wish i could try cannabis oil like my American hd family's. It really sucks seeing all these new aids to help us hd people but not being able to access them.  I really hate for my kids to see me in these moods and hate snappy at my family. Yes iam cranky and can't help it. But remember when im cranky i don't mean to be. I love my family heaps. Hd isn't just killing me brain it's killing my relationships with my loved ones.
Huntington's disease awareness is so important and maybe one day the Australian government will catch up and realize we need to able to try new drugs to help us copy with this horrible fucking disease. My mum died at 51 years my aunty died at 49years. Their mum died around the same age. Please help the thousands of families with hd. Share make hd awareness and let them fully understand what we go through everyday.  Everyday that we don't have new drugs to help us copy with our daily lives they are distroying families. It's our right as human beings to deside what we what to try in our lives not the governments.