Mood:  celebratory

We are going to get meds. Trevor asked for his check early

form his Dad. We were debating divorce. If we did it we would

have money. We could still be together. They expect Trevor to

take care of us. Insane it is. Trevor has a new job. He will get

benefits in three months. In those three months we are

going to have to pay hundreds of dollars worth of meds.

Today feel a lot healthier. I have a clear mind. Shirley came

over. We started our slow cooker meal. I am not surprised

that Gary does not have his meds working. The Serquil works

for a while. The it gets worse. I am still grieving over Jenny. I

saw some school busses here. I saw the bus I saw on the

news. I still need Trevor to hook up the scanner. He is busy

working two jobs to afford everything. He also does part time

for his Dad. We are fighting HD together.  Let’s take the pain

and put that away. We can live without the pain of HD. We can

learn to live without it. HD is fighting against us. It is fight and

we are fighting. Our life is on the line every day. Never give up

 fighting. Never stop fighting. Never stop. HD can win. We

cannot let it take our life away. Take away our meaning of

our life. There are so many reasons to fight. We need to live

with HD. We need to live period. We need meaning. A reason

to live. Live and live your life. Accept HD. Accept that we are

getting sicker. We are going to get cured shortly, until that

Mood:  cheeky

I am feeling really sick today. My HD is so bad. I am

completely out of it. Having g total brain fog. My home

support situation is worked out. They will come at 100 in the

morning and 4 to 5 pm. I am happy. They will come at 10 to do

slow cooker meals with me. I am, felling more capable. Every

night I make a meal. With a little help. I thought they would

steal my independence. They are making me more

independent. I had an occupational therapist come over. She

is getting us grab bars for the bathroom. We are going to

work all of that out. They are all going to have a conference.

All of my Doctors and my family. They are coming out with

plans for my care. We signed up for pahamrphamicare here.

They are making us pay 1000 dollars of meds before I get

covered for 75 percent. That is horrible. How can we come out

with that? My Dad sent us 500 hundred dollars for my meds. I

have not many left and we can't afford too. We just need to

believe that things will get better. They can only improve.

That is what we need to go us through, pure faith and belief.

We will have our day of sunshine when we get cured. All of

this will be worth it. Don’t ever lose hope in the things that

keep us alive. The things that get us going. There are many

reasons of why we need to survive. We will get cured shortly.

Why not live your life knowing that. We have a future. We can

get there. We just can never lose hope. That is all we need is

hope. We will get that day soon. The day were all of them

pain and worry go away. We will get there. It will come soon.

We will get cured. We have a future. Plan it out. Plan our

future. We can have that day of glory. It will come sooner

I am unhappy with my home care workers. They are not

respecting me my time table. I told them to come at four. I

had to fit everything. In. They started showing up at 3:30. I

have to take a walk everyday with Elissya and Lucky. The one

day we were there for five minutes then they came. My walks

are down to 15 minutes now. From an hour I am not happy.

How am I supposed to build neurons? Last night I had to wait

until 5:30 to walk him. He pooed in the house. They need to

respect me. I was a former Nurse. I know my patients rights.

We have them. Sadly very few people know that.  I am not

happy. They told me I could still have the walks. They are

taking all of that away. I started my own HD support group.

Every day I will send you blogs and hopeful information

everyday. If you need support. I volunteered at the distress

center. I am trained to fight  anyones personal crisis. I was

planning either this or message board. When I got an

established base. To give back more. Make an impact. For the

past few days I have been healthy. My brother is having

problems with his serquil. It is not working that good now. I

had a hard Mother’s day. I missed my Mom. There were all of

those shows on TV about Mother’s day. This holiday I always

try to avoid. It hurts too much. Especially the divide with

Trevor’s Mom. I made a banner of my support group that

everyone can click. I am doing that through yahoo. Every day I

will email people hope. This never stops. We need hope to

counteract everyone’s negative message.  We will live HD

free soon. I will keep out all of the trolls is what they call

them. People that have nothing nice to say. I  had that happen

to me. I will not let them in. Be free with your feelings. Will be

free with my hope. We can get cured. We have hope. I can

give you this everyday now. HD means we have to live more.

We ne more hope. We need to counteract all the matter of

fact information. They don’t leave room for hope. I do. I give

Mood:  celebratory

 They are planning a run for the Cure on Septemebr 20. Donate now

or find info.

http://www.runtocurehd.com/

Mood:  energetic

A lot of hope for a new cure. That is amazing. My Mom was right. This

is our year for breakthroughs. Just beleive in cures. Plan your

future.

http://www.hno.harvard.edu/gazette/1999/06.17/huntington.html

Mood:  energetic

Tomorrow is Mother’s Day. I will forever love and cherish my

Mom. When she was alive I brought her flowers on Mother’s

day. No one could replace her in my eyes. She was and is my

Mom. Even though she died when I was seventeen. I was

devistated when she died. We were so close. I loved and

looked after her in the hospital. I missed two weeks of the

first semester of school. Nobody thought I could graduate. I

missed so much in every class. 4 chapters of everything. I

showed them. Graduate with good grades. I finished for my

Mom. When Trevor and I had our wedding I put up a picture of

her on a table, with flowers around it. Everyone was touched.

It got all of them in tears. They told me that my Mom would be

proud of me. Approve of Trevor. I loved her that much. No one

can replace you. She is the one that sent me two dreams on

me getting cured. It will happen soon. I believe my Mom. In

her first dream she told me I had HD. Two days before I got

my results. In the end my Mom would only talk to me.  She felt

 I was her salvation. I made her life that much better. My Mom

had a smile that could bring happiness. She was an amazing

 seamstress. Made all of her own clothes. Her sister too. She

never tried to escape from HD. She was brave. She was my

inspiration in dealing with this. I could only hope to be as

brave as she was. I know she is probably  proud of what I have

done here. I opened an HD door here. One that won’t close.

She was hilarious.  We want future with HD.  We demand

hope. I know she probably would be so happy. I am trying to

 affect change for everyone that comes here.  We do not have

to be unhappy. Not anymore. I did that Mom. She was s my

Mood:  happy

Yesterday at Phsyio he had me do some exercises that would

make my chorea less. It made it worse. Every time I did a set

they got worse. Next time I will need to do stretching and

massage. We went for a walk so he could how bad my chorea

was. I was so confused yesterday. I went to the wrong

apartment building. Thought it was mine. Got confused when

I did the exercises too. Shirley and I made a slow cooker

meal. It was so good. She is going to come at 3:30. We need

time to make dinner. World War Two was the only way I

actually supported. We are happy that Hitler did not take

over the world. I am glad that thanks to the military we can be

free. Let’s enjoy our freedom and our lives. Let’s love all of

ourselves, including the HD. Forgive yourselves for what HD

made you do. It is the disease and not you. It makes you act

that way.  Forgive and love yourself for what you are. I know

how strong everyone is when they have HD. Every day is an

unending fight that we can win. We can be happy. We can be

hopeful. We can be anything we want too. We have to fight

HD. Get the control back. Take our future back. All of that

belongs to us. We need to live.  We need to not give up

everything. We need to get everything back. Take back our

lives. Take them.