Mood:  mischievious

I met with my home support head Nurse today. She seems

nice. I told them that I need time to run this site. I will get it. I

mainly need the med reminder. I usually don’t remember. I

am kind of still a bit scared. I usually am with change. I am

sure I will enjoy the Nurse. Last night I made supper. Yummy.

They start Monday. I accepted I am sick. We will get sicker.

That should not change how we view life. Life is great. Our

future is great. Everything can only get up from here. We can

have real hope know. Real cures. Real breakthroughs. I

believe. There is too much hope for us. Let’s learn to love our

life, ourselves again. Believe in our future. We can get there

easy.  It is not far. We can hold on. We can make it in time. We

can learn to live again. A hundred percent healthy. Right now

we have to deal with HD. Until the cure comes. Hold on. We

don’t have long until we are cured. Fight HD with everything

Mood:  energetic

Tomorrow we get everything sorted out with home support.

On Monday it starts. Today I am really sick. I am so sick. Last

night there was twitching in my leg for a long time. I have bad

chorea. I love spring. I was taking Lucky for a walk. There was

a little kitty in the road. A huge truck was coming. I ran and

saved that cats life. He might have gone and got ran over.

Poor kitty. I chase him off the road. We need to take

everything with passion for life. Passion to fight. Just not

live. Love your life. Live your life. This is all we have. We need

to have unwavering hope for the future. We will get there. We

can live again a hundred percent. Motivate yourself to

greatness in your eyes. We can do anything we want to. I

never let HD get in the way. Fight HD. Loosen its grip on you.

Loosen it. Breathe again. Live again. Just breathe. Your life is

in your hands. Do what you wish. Live your life now. You have

it back.

Mood:  energetic

All of my Doctors are going to have a family conference so

that they can think of ways to help us. Trevor’s Mom is pulling

 away from us. She has been doing it for three months. She

wants Trevor and I to separate. She ditched me in the

hospital. Promised me she would come. My Dad was going to

come and take me home for a bit. She never did.  All we really

have is my Dad right now. When I was hospitalized, that is

when she tried extra hard to part us. When I left I did not

know if I had Trevor to go home to. She is trying to break our

vows. He told me no matter how bad things would get he

would never leave. My Dad is all we have. She went on a trip to

Mexico. Never came back the same. She avoided us. On Friday

I get to talk to a home support worker. We are going to

organize everything. They will give me time to do my site.

They will be here in the morning for meds. We get 5 days a

week free. That is good. With all of these problems. All we

can do is hope. Things have to improve. We have to believe.

Believe in life and being HD free. It is hard to have this

hanging over our heads. We have to cope. I believe that

everything has to get better. Believe in our happiness. In our

joy. In our laughter. Believe in all for the good things that will

come. The good things that have.  All good things will never

die. Hope will never die also. Hope for our future will never

die too. Always have that. Having all of that will help you live.

 I won a  huge award. This is like becoming on the top 100

Disability/ Disease blog list. I did not apply. They found me. This is

huge. I won the Disability Newtook Award. I had no idea I would win

this I am so happy to have won this. I started something positive for

a change. I am being rewarded like crazy. I can win all of this. It all

still about my mission. All of that takes a back seat.  If I have helped

or changed one person lives that is all I need.  Live and love your

life. All of you believe in yourself and you can do anything. When I

do this I don’t question. I just do. I want everyone that comes here to

know that things will get better. There is real hope here. Real hope

for us. We will get cured shortly. I wanted you to have hope for the

first time. Don’t be afraid of HD. It won’t be sick with it long. Just

believe a hundred percent in our future, without HD.  It will come

sooner than later.  We can have our miracles. We will have them.

We will have our lives back. There is o much hope now. Just believe.

Mood:  mischievious

The past three days, I have been healthy again. It is weird for

getting so sick and so healthy. Yesterday I was eating. I saw

bugs in my soup. Very scary. I thought they were real. I have

been falling still. I have been walking around on the back of

my feet sometimes. That is what Trevor says. I did that going

down on stairs. Now I constancy walk. My best friend came

over twice this weekend. She lives downstairs. They are like

or second family. Let’s learn to live again. Let’s learn to hope.

The best is yet to some. The best will come. Never lose sight. I

have already planned my future. I believe a hundred percent

that we will be cured. We get closer and closer. Every day we

do. We will have our lives back. We can live HD free. It gets so

close. Never surrender. Never give up hope. Never give up our

happiness. Our joy. That is something that can help us keep

through HD. We can fight you. We will win soon. You will be no

Mood:  don't ask

I miss my Jenny today. I have really been through the grief gauntlet.

Mood swings and depression. I will make her page soon. Trevor

needs to set up my scanner. Why do they have to take the young

ones? I knew the other boy. He was 14 years old. I see busses on TV

or here. I remember all of the news broadcasts. That is all I see. I

know all of us have seen it. That has traumatized all of us. I am also

happy and sad. She bought her grad dress. They also were planning

a trip to Disney Land when she died. She loved Disney. Everything

about them. I am so glad they left my family alone. Thanks to me.

We both loved animals to no end. She would have been the best

veterinarian ever. I used to babysit her all of the time. She had a

smile that lit us all up.

My Lucky looks so cute. I am going to put of pictures of his little

haircut. The woman did show dogs for years. She worked on our

Lucky. I am still a bit scared of getting home support. I have a huge

 problem remembering my morning meds. Most of my problems are

memory. I work on Monday. The life alert is something I wear.

 I hope my meds work. My Dad is going to pay for our home

support. Thank you Dad. Especially now me and Trevor can’t get

benefits. The excepect him to look after me. They don’t realize how

tough it is.  I am having big changes now. I have to accept this. We

will all get sick. We are sick. The difference is that we will get

cured. There is nothing greater than the knowledge. Run that

through you head. We are going to be saved. Our lives will belong to

us. Never lose hope for our future. We will get there. It may

take awhile. It will be worth it. We can get there. We can have our

 dreams come true. It will happen. Never give up hope. I have to

warn anyone in an online support group. There is a woman know as

M. She was banned in some of the other groups. She is in the at risk

one. I go in all of the groups. I help people that are in crisis.

They need so bad. I answered a girl who is scared of HD. Helped her.

I don’t want to repeat what she said.

Everyone reacts differently to the results - whether the results are

positive or negative.  Some people are better able to handle

hearing that they are gene positive; others react negatively to

hearing they're gene positive (turning to alcohol/drugs, lashing

out at others, trying or successful committing suicide); and others

have a different reaction to even testing negative (especially if

other family members have tested positive or are still at-risk). 

You'll never truly know how you'll react until you get the

results...some are willing to take that chance and others are

She made everyone on there more afraid of HD. This really bugs me.

We have the highest suicide rate for any illness. We already have

people terrified. Why would someone make it worse? This is the

reason I am fight for your right for hope. Your right for a future. Don’t

listen to her. We not need to fear HD. It is not bad at all. If you are

scared. Think of the possible future. Getting diagnosis of HD does

not change our life. Still live. Still fight. I am in home support and

still telling you it’s going to be fine. Don't let anyone tell you

anything but the hope that we can have. Never lose sight of how

impotant every life is. Our lives are important.

Mood:  incredulous

Today I had my home support assement. It lasted for 4 hours. They

are going to come over every morning at 10 in the morning to take

my pills. I can’t remember the meds. They are going to come clean

and help with dinner. An Occupational Nurse will come and help us

 get bars out where they think we need them. When Trevor goes on

respite. I am going to be looked after by a member of the staff. I am

getting life alert. Everything went well. I  was really scared. I had

hallunctions like crazy. I am also feeling a bit of anger. I know

these meds take a while to work. Today is Lucky’s first hair cut. I

need to accept this. It is hard.  We have to roll with the punches. We

never need to lose faith in our future. We well have the day we been

waiting for. It will come soon. This is our year. I  still believe that.

We can never lose sight of our future. It is ours for the taking. We

will be able to live again. We can live. We can live now. I am living

even though I need home support. Take this strength from me to all

of you. We need to be strong. We need strength everyday to fight

Mood:  incredulous

Today I had my home support assement. It lasted for 4 hours. They

are going to come over every morning at 10 in the morning to take

my pills. I can’t remember the meds. They are going to come clean

and help with dinner. An Occupational Nurse will come and help us

 get bars out where they think we need them. When Trevor goes on

respite. I am going to be looked after by a member of the staff. I am

getting life alert. Everything went well. I  was really scared. I had

hallunctions like crazy. I am also feeling a bit of anger. I know

these meds take a while to work. Today is Lucky’s first hair cut. I

need to accept this. It is hard.  We have to roll with the punches. We

never need to lose faith in our future. We well have the day we been

waiting for. It will come soon. This is our year. I  still believe that.

We can never lose sight of our future. It is ours for the taking. We

will be able to live again. We can live. We can live now. I am living

even though I need home support. Take this strength from me to all

of you. We need to be strong. We need strength everyday to fight