Heather Bloggie

Hallucinations

Fri, 16 May 2008 14:00:01 -0500

I was hallucinating like crazy last night. I saw a moon that

was not there. A full moon. I also heard someone getting into

our house through the balcony. I got up and checked. I

always think that is real when I hear people breaking in. I

have been HD free for the past three days. I have a new home

support lady coming up shortly. Yesterday I made the

yummiest stir fry. I am glad I am no longer afraid. They love

Lucky. They were expecting a barking mean dog like the

other ones. They are surprised. Our Lucky is not vicious.

Never barks or bites. He is a sweetie. The best from that

breeder. The rest were snippy. I had to save another cats life

on Saturday. This one was even closer to getting run over.

This guy was going so fast. The cat was just sitting three. I

need to start a cat saving business. I had my animals ran

over all the time. I will not let that happen to someone else.

My brother Scotto is way too scared to get tested still. With

our track recond who would not be? Everyone but Lisa has it.

Something horrible is happening to Trevor's Aunt. She might

have MS. She will get the diagnosis soon. My Mom’s best

friend inthe hospital in Rimbey had MS. I looked after her.

They were both in 35 when she was admitted. My dad’s best

friend has it too. This just hurts me. Not only was my cousin

killed tragically. Now we have to deal with more. We are all

showing signs of HD .All of this happened in three months.

This is worse than when my Grandmother and my Aunt died

two weeks from each other. I found out I had HD in the time.

My Aunt had HD. My grandmother died of Lung cancer.

Whenever someone gets a diagnosis it is another grief.

There are two of us that need to get tested. There are three

of us that are sick. Just accept HD. I am going to get worse. So

will all of you. What keeps u going is our faith. In the cure,

Faith that everything will pass over. We are all tough

because of what we have been through. We can handle that.

Believe in the future without HD. We can get there. We can

get stronger each day we fight HD. Only we know the struggle

inside. Only we know the fight that we have to make every

day. Every smile and laugh takes lots of work. Only we know.

Every second of fighting is always worth it. We can’t let HD

bring us down. We can fight you. We have the unending hope

for a cure. Shortly that will happen.

Another International Award

Thu, 15 May 2008 14:11:33 -0500

I have just won my number 49 award. I am one away from 50. I

am so excited. The most awards for any new site. This is

another international one to boot. In 9 months of having my

site up. How does a person with HD do this? I started this

when I was sick. Go full on to what you want. I never let HD

rule my life. Never let HD rule your life. It is yours to do what

you want. Live your dreams.That is why my dreams are

coming true. I wanted to make a positive site that changes

lives. I also wanted to make an award winning site. That is

secondary. I always try to win awards for my Mom and Dad.

Dad pays for my site. He paid for my schooling. I have HD. I

could never pay them back. Especially with early onset. I also

help us get the word out about HD by winning these awards. I

am internationally recognized. I am bringing in other people

that do not about HD. I am getting word out. I am helping us

get more people to know about HD by winning all of these

accolades. It will always be that way. Daily hope is what I

started this for. I do not care if I am immobilized and can’t

move. I will never stop this. There is nothing else for

everyone with HD to get hope from. I understand having HD

how bad no hope is. I know there are people that want me

too stop. I am not naming names. The person that came out

with that article saying we would never get cured. Two days

after mine. Do not listen. We are going to get cured. It will

happen. I started my hopeful revolution. Will never stop ever.

My home support workers know that too. I have it too. It does

not go telling us matter of fact. We need more. We need

actual hope. Need it so bad. We also need people to know

how hard this is. Everyday how brave we all are. We know.

Now other people know.

Happy Victoria Day

Wed, 14 May 2008 22:57:16 -0500

Hopr Builds

Wed, 14 May 2008 13:46:41 -0500

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

we are sick. Own HD. Own your life living with HD.

Hope

Tue, 13 May 2008 17:07:10 -0500

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

than later.

Mon, 12 May 2008 12:05:40 -0500

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

everyone hope. Take it. Live your life.

Happy Mother's Day

Sun, 11 May 2008 11:41:40 -0500

Run For The Cure

Sat, 10 May 2008 15:00:33 -0500

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

or find info.

http://www.runtocurehd.com/

Possible New Treatment

Sat, 10 May 2008 14:57:11 -0500

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

My Mom

Sat, 10 May 2008 11:48:42 -0500

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

inspiration.