Heather Bloggie

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.

Psysio

Fri, 9 May 2008 12:17:58 -0500

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.

We are all free and grateful

Fri, 9 May 2008 00:01:40 -0500

Thu, 8 May 2008 11:40:53 -0500

Yesterday a new home support worker came over and

helped me make dinner for Trevor. That was yummy stuff. We

made a stir fry. I was so sick the past two days. Really tired

too. Made everything worse. Had a hard time dressing. We

were talking I totally brain fogged out. I was doing aerobics.

Had a horrible toe seizure. They kill me. Today I feel it will be

a relatively HD free day. I have Phsyio today. Every time I go to

see him I am relatively healthy. Imagine that. Yesterday my

little Lucky was having some nightmares. Poor little guy. He

was wimpering and scared while sleeping.Let’s live life

together. This only shot at life we get. Let’s enjoy it. Let’s live

like we have nothing else. Learn to love your life the way it is.

Live like you are dying. Live and love your life until the cure

comes. Do not give up on yourselves. Do not give up in life. We

have to fight HD. Get control. This is our life HD. Give our

happiness back. Give our hope back. Give our future back too.

Give it all back. We deserve to have a great life. Do not let HD

take that away.Fight with all fo the strength you can muster.

This our happiness HD is trying to take awy. It is these basic

that we are fight so hard for.

Cured

Wed, 7 May 2008 13:24:38 -0500

Yesterday we went on a hike in the wildlife center here.

Trevor and I took Lucky out there. He loved it. He was so

happy. It was a nice hike. There were lots of animals all over

the place. I saw my first turtles. I love turtles. Last time I went

I missed them. They were so cute. I am planning to climb a

mountain this summer. I am blogging, I am trying to eat. I feel

like I am going to throw up. I am so glad for the ensure. I have

been spilling like crazy. Trevor’s Mom is still going against

us . They are afraid that I well get sick and it would cause

him to get sicker. We are going to get cured soon. I will never

be that sick. We do not understand why. Since I am off my

Serquil I am back to my old self. Have not got angry and

freaked out. The hallucinations are down too. I have not

gotten much now. Shirley will be here in half an hour. She is

the perfect Nurse for me. We are going to live. My Mom gave

us all of the signs. I think this dream was a reminder.

Remember that. We are so close to getting a cure. This is

what we need. A reminder. Be strong. Live. It will all be worth

it. We can have real tangible breakthroughs. They are

substantial. None of us are going to die anymore. We are all

going tom live together. Cured wholly. Never lose site of the

whole picture. We will live HD free soon.