Sunday, March 30, 2008

Crawford bay

I am finally home. I have been really, really busy with going to
Crawford Bay. I am going to Nelson tomorrow too. I am excited.
Crawford Bay was so fun. I took Lucky for tons of walks, the hotel
commented. They said he is very Lucky to walk all day. He is so
cute. We are crate training him right now. He misses Mommy
whenever I leave. He has me 24/7. We ran into a bunch of Wild
Turkeys. Saw Bear tracks. They are just waking up. Apparently
today I am a quarter century old already. Trevor and I went out to
dinner. Yummy. Tomorrow Trevor and are going to see Wrestle
Mania. It is always around my birthday. I have been doing that for
most of my life. I am glad I never got to be a Diva. There is no
respect any more. When I wanted to do that, it was before they were
crazy sexualized. A WWE dive feminist? Imagine that. Today I am so
confused. Everything confused me. It got really bad earlier. I put my
skirt on inside out this morning. On the way home I was trying to fix
and it ripped. How embarrassing. Have to make the best out of it
though. One thing I am dealing with when it comes to HD. It is the
change in my face. It is rapidly aging my face. That is a hard thing
to lose for a young girl to lose. When I got my meds changed I had a
very scary 2 days. I saw the forest move. I saw scary man at my door.
I saw Buffalo. I got so scared I had to get close to my Trevor. Trevor
is burnt out. He works way to much. We are working on a plan to
help. 2 days a week are for him. I had a scary dream. Now it is all
good. No matter how scary things get how much things change. We
have to hold faith in our lives, or future. We will have that. We will
have everything we dream of. We just have to accomplish our
dreams. Dreams give us a purpose. They give us something to
reach out and live. Always live. Always love. Always have hope.
Things have to get better. They will. It takes time. We have to learn
the lesson we are meant to learn. We have to learn how to be
strong. How to love ourselves even though it is so hard sometimes.
Forgive yourself and others. Life is too short to live that way. We
have little life, big impact. We have to see that. We are the ones that can have that impact.

Wednesday, March 26, 2008

Crawford Bay

We are going. I hardly get to go any where. I am excited. I have only
been in a hotel three times. I will be gone for four days. While I am
away. Live life. Love life. We can make our lives really mean
something.Go out and live that way. We are special. We are strong.
We can fight with happiness and faith. Just know. We will be cured.
I am feeling so much better since I took the extra 50 mg last night.

Crawford bay

We are going. I hardly get to go any where. I am excited. I have only
been in a hotel three times. I will be gone for four days. While I am
away. Live life. Love life. We can make our lives really mean
something.Go out and live that way. We are special. We are strong.
We can fight with happiness and faith. Just know. We will be cured

Meds Change

I won another award. It is a bear award. They upped my Serquil up to
200 from 100. It is supposed to kick in within an hour and I will
feel good again. I was hallucinating about Lucky. I have been
unstable. I have been feeling off and on sick. Trevor was
compressing me last night and felt my twitches. I saw him near his
food bowl and disappear. I had a dog saving day. Elisha and I were
walking Lucky. There was a stray Jack Russell Terror. We did not
recognize him for the neighborhood. Nobody knew him. We saw a
dog tag. We took him home tried to call his owner. We are not
allowed dogs in our apartment, except for Lucky. We gave him to
Trevor’s parents to look after. We can’t get a hold of the owner. I
have a bit of a cold now. Cough, sneezes, all of that fun stuff. We
might not go to Crawford bay. It is in the air right now. I am turning
25 on March 29. At that time I would have had HD symptoms for 2
years. It kicked in right around my birthday. What a birthday
present. I feel that way. Having HD has enriched my life. All of your
life too. We truly live life. We cherish every minute of life we get.
We have to cherish everything. We have an illness that should
teach to love what we have. Appreciate the good and hard times. HD
helps us grow a different perceptive. It is hard. Trevor’s Aunt
Carolyn is looking into that EFT therapy for us. She said that she has
seen people with MS come out healthy. I am afraid of needles. But I
am seriously am going to get acupuncture.

Tuesday, March 25, 2008

Easter Fun

Sorry I was away. So busy. My computer finally got fixed. They did
not plug in my disk drives. My meds have not been working. I am
having hallucinations and paranoia again every day. I am fighting
a bad depression. I have also been really irrational and obsessing.
I was once happy go lucky, took a down turn. I had to fight so hard
to not do that. WE ARE IMPORTANT! WE DO MATTER! Our life does
count, even when you don’t think we do. We matter and add to
other people’s lives. This is the real HD. We all struggle. We all
share the same pain. Know what I figured out. Everything will be
okay. We have to fight so hard every day to stay alive. To have that
hope. We can fight through these mental symptoms and win. We
can. We can fight. We have a chance. Alice and I are going to Dr
Walker to get my meds upped. I am going so insane. This is the
fight of our lives. One we can win. It is so hard. We can do it. We can
make a life worth living. Out that pain comes love. Brings us hope
again. Never give up you lives. I did not. Our life is not worth is to
give up or take away. That is also how I live my life. I did have a fun
easter dinner with Trevor's family.I updated the HD infomation
page.

Friday, March 21, 2008

Happy Easter


Thursday, March 20, 2008

2 more Awards

I won 2 more international awards. The first is a Peace and
Harmony Merit award. Michaels bronze award of excellence. More
hard to win ones. I saw Mountain Goats twice again yesterday.
Went for a walk around the lake. I went around the each. I saw lots
of cute ducks and geese. I saw the geese plop into water. I never
saw them do that before. I was not bad. Today I am really confused.
Had trouble dressing. This would be a bad HD day. Something bad
happened last night. I was looking in the MSN search engine for
forums. I found a really, really bad one. I found a forum that had a
boy porn folder. That was so scary. I watched a W-5 on this crime
tips service. It’s in Winnipeg. The national Child porn service. It is
just for child porn. I knew what to do. I called them today and they
are going to investigate. They put a password on it. I know from that
show that Police can crack that easily. This hurts because I get
really upset whenever anyone gets violated. I would never think
that I would ever find that. I thought I would blog about this
experience. It is important to be aware and know where to go if you
find these horrible things. I do feel good. I busted a Boy Porn forum.
That is the only thing that I can see good. I hope they go to jail for a
long time. When something like this happens it hurts so much. At
least the police can take care of this. We have to pull through
somehow. We have to believe that things will get better. It is hard
for me right now. Last night I almost called the crisis line here.
Every day we have to fight for happiness and normalcy. I need that.
We need that. When something like this happens it hurts more than
words can say. That just means we have to fight harder and harder
for any sense of tranquility. I am just glad, he will go to jail. Stop
hurting little kids.
Here is what Michel had to say about my site
An interesting site with much information - for sure an important
resource in the web for all interested visitors. It is a very personal
site, dealing lion-hearted and openly with a severe sickness: the
Huntington’s Disease. Plenty of information and care giving tips are there - it is hope for the future and for others.

Wednesday, March 19, 2008

Bronze Reach for the Stars Award

As you can tell I am in the process of changing the layout of my
bloggie. I have set it up. I have to go through every post and change
its colors, that part will take tons of my time. I blog every day. I like
this look. I wish I had it sooner. Armyliss Lilies are my theme for my
page. HD international flower. They took their symbol from these
Lilies. I have lots of people ask about the Lillies .I have won another
international award. It is a bronze Reach for the Sky award. Thank
you for the award. They loved my inspirational site. I have been
winning a lot of them now. Those hard to win ones. Whenever I win
something like that it surprises me. I applied for most of those 2
times and now I am winning them. Weird. No matter what we should
never give up our goals. When we lose never give up your dreams. I
have spilling nonstop today. I spilled salsa all over. I am
experiencing the problems with my upset tummy. Today I threw up
my dinner. I have been twitchy but generally alright again. This is
weird. I went with Alice to do our laundry today. Tomorrow I am
going to Nelson with her again. I won’t be blogging. I want Mountain
Goats. They are so cute. Lucky is the best aerobics partner ever. I
have a Chi Ball. It is a 5 pound small ball. I was using it and he tried
to take it from me. It was so cute. I love being a Mommy. We got him
around the time where I found out I had HD. Me and Gary. It is good
for him he has a Mommy who can look after him 24/7. He even sits
in the chair when I blog. He does not bark at all. That is rare for a
Terror. He is our baby. We see animals like humans here. They are
better than a lot of people. Take joy. Find something you can hold
on. Always have a dream, a goal. The little life you have, live out
your dreams. They are so important. They make us get up in the
morning have a focus. My dream is to go to see the ocean with
Trevor. I never got to travel because my Mom was sick. It was bad if
we went away without her. We are going to Queen Charlotte Islands
this summer. I want to see all of the wildlife. I never had been out of
Alberta until I met Trevor. When I first came his Mom made a nice
trip to all of the hot springs here. Obviously I love it. Moved here.
Setting goals is key. I have little healthy time and want to live out
my goals. Everyone needs them. You can’t live and love life without
them. Another goal of mine is to run this as long as I can. We need each other. When you are sick dream more.

Tuesday, March 18, 2008

Textbook

Yesterday I was sicker than I was all this week. Which was good. I
went to Pshysio and he did not have to ask me to act like I am
sicker. He taught Trevor and I an exercise for him to notice my
twitches. We do it when I am exasperated. We did that and that is
the only time I noticed the twitches. I did the same exercises as I
did last week. What is funny I did better than sick than before. Very
funny. I jumped so high, last time I needed help. They noted that my
HD can vary every day. It gets worse for any time period and then it
gets better. It also varies during the day. I told him about my web
page. He wants me to be more active to make up for this. He had me
walk outside. Up stairs. We found out that I was walking on the my
back foot. Now I have to remember to walk flat footed. Yesterday I
was very sick again. Had trouble dressing and bathing. I had
trouble chewing. I was scared that I would go through another bad
stretch. I also overslept. That kills me. Today I am healthy again.
We had to pay 15 dollars for every Psyhsio appointment. Trevor
said how strapped we are and he was nice and let us pay 5 dollars
every time. They are a nice crew there. All of my Doctors are really
good. We told him about my positive HD site. He said that majority
of information is matter of fact and with that comes for the no hope.
That is how it is though. Nobody gets hope from matter of fact
saying you are going to die. You have 20 years left. We need hope
so bad. He is impressed with my mission like all my Doctors. I found
a need and fulfilled for everyone that has HD. We needed hope so
bad. I need to give it to you. Try to stay away from that matter of fact
approach. That tells us our illness; we have to live our lives with the
knowledge of hope and faith. We will get cured. Who cares what
the text book says. We have a good quality of life, if we have the one
basic thing to survive. That is hope. We can’t survive without hope.
It is little to find. It makes all of the difference when we get it. That
is our life line. Knowing that everything will be okay. We will have a
great future when we do get cured. Never give up believing that. We
don’t need textbook answers. We need real live hope. No wonder
HD has a high suicide rate if this we face. Textbook for everything.
We don’t need you. We will survive fine. We will cope. Just give us
hope.

Monday, March 17, 2008

Happy Saint Patty's Day


Forgot about Saint Patty's Day

I have been weirded out now that my symptoms are less. It is sill
weird going to near home care to healthy. I am just waiting for this
to end. There one things that has not changed is my falls and
mobility. That is really bad. I am spilling everything. I feel like I
clear mind. When HD takes over you don’t have that. I describe it as
it is clear. I know this can’t last long. These beginning stages with
me, I had months when I was not sick. I know now that they get
worse every time it gets bad. I know that the healthy days can
completely go away. The time period would get shorter. This is
something I had to learn, not anything they tell me. I have Psyhsio
again today. At 3:30. I fell into one of our tables yesterday. I have
been falling, Trevor and I were channel surfing. Get this. They had a
bit about falling and the elderly and sick. Ironic oh yes. They are
trying to make a special kind of floor that absorbs falls. The one
they made you could not walk on. Let’s see what they come out with.
Trevor is worried again about losing me. I once again told him I will
get cured. We will all live. It does not matter how sick we get. Never
lose your hope. I will tell you something funny I do when I do the HD
dance. I actually start grooving. It is so funny. Last night I was doing
disco will HD dancing. I did it at Trevor’s Aunt’s house. When I first
found I had HD gene, I told my HD social worker about my dancing
to deal with the diagnosis. I was not going to do any drugs or drink.
That affects us so much. I am glad I never touched any of that stuff.
I must of known that is would do bad things if you have HD. It kills
brain cells that we so desperately need. All of our neurons. She
told me the irony is you will be dancing all of your life. If you have a
sense of humor that is so important. My Mom had one too. Laugh
through everything. It won’t hurt you as bad if you don’t. It can get us
through anything. Laughter can help improve your outcome of
everything. It can help us deal with hard times, it won’t sting you.
Laughter is what they say, the best medicine. I am Trevor's hero. He
loves how I am tryingto live my life the way we are all supposed too.
Show people how to live too. Happy and joyful. We can all get there.
We have to fight like it is everything to get there. I made this for St.
Patty's day. Happy St. Patty's day. We got confused Tevor and I and
thought it was Easter time! How funny is that!

Sunday, March 16, 2008

Wild Turkey's

I have been feeling healthy the last two days. I have just been
having a few problems with my mobility. I am tripping and almost
falling. Yesterday we had fun in Cranbrook. We went and watched
10,000 BC. It was a good movie. The thing my Physio Therapist said
that we have problems with our vision. I have noticed sometimes it
is hard for me to see the whole picture. I have a hard time scanning
everything properly with my eyes. We went for a drive today took
Lucky for a walk around Duck Lake. We saw wild Turkeys. We saw
them 2 days in a row. We saw Beaver’s today. Lots of animals. I love
spring. It is my favorite season. I love everything it brings. We have
to find joy someplace. We should take joy in everything that
surrounds us. There are lots of things that make us happy, and live
fuller lives. Go out in the sunshine. Live in that place. Never be
afraid to go out inside and live your life. We need to live a full life
as much as we can. Let’s make something worth it. Let’s make life
happen. We have the power to do that. We can live fully. We can
manage that. Do live life fully. It’s all we need to do, love your life.
Learn to love and live again. We can do that. Don’t let HD stop you
from living.

Friday, March 14, 2008

Physhio

I had two appointments today. First started out with Physhio. I went
inthere and was not symptomatic. Though this has been the worst
day I had in awhile. Three days in row. I have a feeling these days
won’t last long.That is something I am more than happy to accept. I
did some test he needs exercises so he could see anything that
work. He made me jump. That was the worst. I had problems lifting
my legs for one exercise.He said, most of my problems are control.
He set goals for me toachieve after this. I will learn the aerobics
exercise ball. Also I will dance again. I would be able to
skateboard again with pads on. I have not skateboarded in 2 years.
I just got to afraid of hurting myself. I have always wanted to use
that ball. I was afraid because of my balance. They use in the
Caribbean Workout. That is my aerobics. Another thing I must do is
get over the fear. I found it very helpful and fun. Very funny. I have to
see him on Monday. He gave me some exercises to fight the chorea.
I have to start walking mechanical. Like a robot. I also have to
notice a trend, which way I dance.I fell out of Trevor’s Dad’s van. I
was lucky Trevor was right there and caught me. Next we went to
see my therapist. It was the first time I have seen her since I found
out I had HD. We had a lot to talk about. Everything is getting so
expensive now I am sick. Kate told us about a Ministry here that will
donate money to disabled people for trips. They will pay for gas for
their trips. It is expensive for us to go to Calgary every three
months. They could also pay my Physhio. Kate is talking to them
about letting us in the program. She is a great therapist. That is
something our advocate did not know about it. I can’t get any
benefits because we are married. Three weeks after we married,
they told us we should not because we get us no benefits for us. We
are glad we aremarried. That is horrible that they expect the other
partner to take care of the other. That is why most families have
nothing. I am going to Cranbrook with Trevor tomorrow. Lots of fun. I
will be gone all day. No blog I am also going there on Tuesday with
Trevor and Alice. Two days coming up. Sounds like fun. She was so
nice getting my hair cut last time. Everyone have fun. We have to
live. Everyday make it great. Make it happy. Don’t let anything get
away from your happiness and your dreams. We are sick, but we
can live.We can truly live life.We can learn to love it again. With all
of these awards I won. I am dedicating everyone to every person
that has HD, or in their family Ido.. You guys deserve them as much
as I am hoping these awards give everyone a bit of luck. We all
share the same story. We have this it is in our family. We are all the
same. We are all one joined family. We all need hope and luck on
our side

Thursday, March 13, 2008

Better Now

I am healthy now. The past two day has been a change. No falls. I
can do everything like I used too. It is weird to go from near home
care. I think I figured out my beginning stages of HD. I did not know
what was going on. Had to think. I had no idea why I got so bad and
so healthy again. They get really really bad and then really really
good. All of symptoms came and go. I was so sick two days ago I
could hardly do anything on my own. Now I can do everything. I
think their gets to a point where the good stops coming. It sets in a
hundred percent. It is weird. I was so upset and scared. Now I feel I
am not symptomatic at all. I have balance issues. That is about it.
My computer is going to be reformatted. I had troubles putting this
together. Plus it is still not having my disk drives reading. It is
weird. It is good to be married to a computer tech. He fixes all of my
computers. He is always doing fixes on a lot of computers. Back in
Calgary he used to reformat, build, or fix computers for people.
They paid him. He made mine as birthday present. It has learned
so much about them from him. When we first met he was surprised
at how much I knew about them. Being a web and graphic designer
you always need your computer working. I go batty! I have Pshyio
tomorrow. When I first got sick Trevor told me he would give up his
life for mine. He never will ever see how far it is for me to have HD.
Never did anything wrong. It too much to sit there and pity yourself
it. What have I done to deserve this? I never thought about that for
years. Then all of the sudden I had those mental symptoms. The
brings you to that point. I was scared when I turned 23. It was
around the time I thought I would and did get sick. Those mental
symptoms take you places you don’t ever want to go. At that time I
was at SAIT for my Digital Graphics Communications. I had to quit
after one semester because I got to sick. I got so depressed. I
thought I let my Dad down. He was paying for my school. He paid for
all of it. My Care Aide too. Sick and have loans that you could never
pay off, did not look good for us. I had to pull myself out of it. Trevor
was so worried about going to work I was that bad. I told Loretta my
HD social worker about it. She said it would be good to volunteer.
The distress center. HD Calgary Society. Those were my first
mental symptoms. She gave me hope again. Hope I never let go of.
This is what I have. This is learning what life really means. We are
chosen to have HD at random. I have it. It is a struggle that only we
know what it is like. Every day we have to fight for happiness and
hope. It is worth every minute that we have control. We don’t have to
feel depressed. We have a hard disease to fight. We can do it. We
can all destroy all of negative thoughts out of our mind. We can. It
is hard. We can win here. We have the inner strength to fight. Even
when we doubt it. Just remember we have it inside us. We are all
mighty warriors.

Wednesday, March 12, 2008

A Quote

This a qoute on of my friends sent me. I thought it made a lot of
sense:


We resonate with one anothers sorrows because we are
interconnected. Being whole and simultaneously part of a larger
whole, we can change the world simply by changing ourselves. If I
become a center of love and kindness in this moment,then
inasmall but hardly insignificant way,the world now has a
nucleus of love and kindness it lacked the moment before.This
benefits me and it benefits others

Scarred

Yesterday was rare. Usually I am happy and not scared. I get
scared bad like probably once a year. Trevor calls everyday 2
times to check up on me. When he called I was in tears and told
him I was scared. I was getting sicker. I went downstairs to my
friends Elyssia and Nefertiti. Every day we walk Lucky. They knew
something was wrong. They calmed me down. They are such good
friends. Trevor was so worried he came home early. Trevor heard
about how comforting they had been, we both went downstairs.
Then we made a Physho appointment. I go on Friday at 8:30. I am
excited for physho. It is about time I am doing that. Trevor told me
after reading that VOW article. He was going to have me home for 7
years too, before he puts me in a home. We are going to have to
make some modifications. I am fine today, and my happy self. It
would not be normal if I was never ever scared. I had so many falls
again yesterday. All I do is spill. Trevor is going to get a baby bib.
That is the kind I want. I have a Dora the explorer Sippy cup I use.
You have to have a good laugh daily. I wanted a hello kitty one. We
could not find one yet. Oh well this one is cute. Yesterday it was
hard to find hope. I have it now. I feel good again. I feel alive. We are
going to fight to feel alive to. We need that good feeling and the
knowledge that everything is going to be okay. Everything will get
better. We will get cures and better treatments. It just takes time.
We will make a life worth living for ourselves. Something we love.
Every day you wake up and can’t wait for your day to begin. We have
to learn how to live again. This is all we get for a life. This is what we
have to accept and learn to love. There are always days when there
are struggles. Like yesterday and me. We have to move on and live
and love life. It gets tough to love but we have to. We have to show
HD we can live. We have you and we can fight you. We can be
happy. We can have hope.

Tuesday, March 11, 2008

Hallucinations

I also ran into Trevor’s BMX. I am running into doors when I am
trying to get the phone. I am again all covered in bruises. Last night
I was also hallucinating. I saw Trevor’s foot turn into Lucky. It was
weird. I am also spilling everything too. I tried to wash dishes and it
almost overfilled the sink. I am putting my clothes on backwards to.
It is getting harder for me to do basic care. I am finding I have to
depend on Trevor a lot on a bad day. That’s when it is bad. Trouble
eating, bathing, dressing. I almost choked last night. I find with me
sleep is everything. So is timing, around night time I get sicker. I do
all of this page stuff before I do get that bad. I had the first good
clean solid sleep I have had in a while. That is everything gets
enough sleep. It can make or break you day with HD. I am slow on a
good day. Things get easier with more sleep. I was worried that it
was getting so advanced that I would not have good days anymore.
I updated My Story. I added where I used to volunteer. My love for
PM Harper. No it is my rally cry against him. When he got elected,
ask Trevor I wanted to leave Canada. Go to Sweden, somewhere
with socialized everything. I always wanted to be a Politian. My best
friend Elyssia might live out my dream. She is going to learn how to
run my site. Trevor does not have the time. Elyssia used to run a site.
If I get to sick to run it. We will still use my words. She lives down
stairs. I just need to show someone when all of this is still fresh. I
can’t leave you without any hope. I added all of the stuff to My
Story. I also added where we live. This does not happen all lot with
me. I am so scared the progression is going so fast and taking me
out so quickly. I am not stupid. The sooner a person gets the worse
and faster it progresses. When I got my results they
suggested home care. That scared the crap out of me. Trevor told
me that I will never be alone. That is the thing I will not die. None of
us will ever have die when we get cured. My Mom would not lie.
Some days that is the only thing that keeps me holding on. We just
have to believe. Things have to get better. No matter how scared we
are, things will improve. Just have that hope. I have to hold on to the
hope and fight for it to right now too. No matter how sick we need to
do everything possible to make us better. I have birthday on the
29th this month. I am going to Crawford bay for 4 days with Trevor
and his family. I am excited. I am going to be 25. I might not be able
to blog. It depends on if the hotel has internet. Trevor said he would
bring the laptop for me.

Monday, March 10, 2008

Hope Builds

After all those awards I was not surprised to find another. I am the
Queenof the Fantasy/ Site Fights. That is the voting box. I joined it.
You fight a new site every week. It was so fun. I never thought I
could become the Queen. If all of this countless awards Trevor says
that I have to set up a million award pages every day. I think he is a
bit off. I have won more awards than any other healthy person in 8
months. This what it means. When I think of that I just get teary
eyed with pride. My mission, my drive for change. Everyone with HD
needed something new. Something hopeful. I actually feel bad that
because of emails, that I did not start it sooner. I never thought that
for years and years you had no hope. I will go really into it a bit of
how hard it is for me to run the first positive HD page. A lot of sites I
tried to link to did not want anything to do with hope. Told me that I
was giving false hope. Also wrote that article after mine that I wrote
my positive article for the HD Advocacy Center. They wrote on how
we will never get cured. They wrote that right after mine. Sent it to
every support group. I won’t tell which respected members of the
HD community did this. Accused me publically of not having HD.
They tried to take away my site of hope. I would not give up ever.
Every HD unhappy life means so much to me. I would go through
any mental torture just to save one life. That says how bad it was.
How much we need it. I love all of my links for taking a chance on a
positive page. That affects me. I had HD too. I know how all of that
leads to suicide in HD. Without hope we have nothing. I still can’t
believe I am it. I feel responsible to change the suicide rate. We
will get cured. That is certain. We will. That is to keeping me going.
I have feeling like I am going downhill. I fell twice yesterday when I
was Trevor’s Aunt’s house. I could not stand still. It was the first
time they really saw the HD, since I have been diagnosed. I used to
have days were I did not get HD symptoms. Now I don’t. I have
trouble bathing, eating, and dressing. When I told my Dad. He told
me to slow down a concentrate on every move. I am slowly
suffering from severe dementia some days. Very confused. You
have to accept these changes. I have. I know that we will get cured.
I know Trevor was worried again. We read the article the VOW. It is
about an HD woman and her Husband sticking with her. He told me
he always would. I will put it up now. It tells all lot about HD
marriages. I keep telling him I am going to live. My Dead Mother
told in a dream that I will be sick, in the hospital. Then she said I
would be cured very soon. You know that is why I believe. That is
why we all should. My Mom in the dream told me too that I had HD, 2
days before I got my results. She told me that, that is why I know we
will get cured. It is truly going to happen. We will have that thing
that we have all been waiting for. The cure of our lifetime. That will
save all of us. I still believe stem cells will cure us first. We can
never lose site of the main picture, there is always hope. It is all
over the place. In the sunshine. In the blue sky. It consumes the
world. Now you can see it like I do.
http://www.washingtonpost.com/wp-dyn/content/story/2008/03/06/ST2008030603276.html

Sunday, March 9, 2008

Zoloft good for us/ Another Award

I found this article today. We have to increase our BDNF levels. I do
listen to music all day and still do my aerobics. 3 days on and 3
days off. That is what can help. Now there is Zoloft. When I am
working on here I always listen to music. I also won another bronze
award. It is a Lindor. It is International again. Now I have 40. thank
you.

http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=545

Saturday, March 8, 2008

Stem Cells Breakthrough

A Stem Cell breakthrough article. They get closer and closer to a
cure. This our year. We have so many great breakthroughs and
hope. I still believe Stem Cells will cure us first. They just keep
coming closer and closer. Never stop believing. We will get cured.

http://www.physorg.com/news124128421.html

Friday, March 7, 2008

4 New Awards/ New Award Page

I won so much awards I had to make a new page. Way too many! I
got that up this morning. I won 4 awards today. No idea why I win so
much. They all especially love the message I give out every day.
Every award giver says something along those lines. This is the
Moon Award. This what they said


Your site is not usual in the web like your life is not usual.
You cannot help yourself, but you want to help other people.
You do it with all your heart and what you doing are really
outstanding.


So we decided to honor your efforts with our
It is another hard won to win. They special made one for me. Ruth
Ann sent me and Supreme Site Award. Beautiful award. Sweet Len
loved my site so much he gave me 2 awards. I appreciate every
honor my site gets. I made this site to help people. These Awards
and hope honor HD. Since I am have won the most awards for a new
site. That’s what hope can accomplish. We can believe in anything
now. We can accept HD. We can live. Thank everyone for these
honors and every person who comes looking for something they
never got before, hope. We all need hope. We can all dream and
accomplish anything now. You can all do it too. Accomplish any
goal you set. Never let HD ruin your dreams and goals. We need
them. I never let HD get in the way either. This life is ours. I have
dinner with Trevor’s Aunt and her family tonight. Sounds like fun. I
am so tired though. I was stumbling all over this morning too. Like
Crazy. Try not to let it bother me. Soon as you let that in that is not
good for your soul. It poisons yourself to let it affect you bad. That is
hard fight sometimes though. Every day we fight and only we know
how hard. As I get sicker I will know more. It is weird I have no
problem eating the past two days. It comes and goes. All of my HD
symptoms are like that for me. Know why I love HD. I have accepted
this all long time ago. I had to accept it again. Once you do it gets
better. You can glean with happiness. We have HD. It is there. It will
get worse. We have to learn to deal with yourself.

Fears

Nelson was fun. We saw Mountain Goats twice. They are so
awesome. I always had a love for animals and nature. That is why
we are in Creston BC in Canada. We went shopping. Had dinner. I
had a hard time eating with Alice. I ordered a salad. All the leaves
and chicken were too big for a person with HD. We need small
bites. I got confused in the mall and thought I was in the Cranbrook
Mall. How funny is that? I told Alice about a huge HD problem I am
having. I will tell you all too. Whenever I eat, I am good for a few
bites. Then I gag and feel like hurling. I wait until it is calmed down.
She said I should eat 6 small meals a day. She is a Registered
Nurse. I heard that too. I have it on here. Now I have to try it myself.
Let’s discuss fears now. We have HD. We have these. Mine are
being mistaken as an alcoholic here like my Grandpa. Every
restaurant store I was in. I talked about HD. My web page. My
mission. I talked mostly with Trevor. Now everyone in their dog
knows I have it. That is good. People walk up to Trevor and ask him
if it is true do I have HD? It is easier In a small town to tell everyone.
In a big city it is different. It is harder. Everyone I have met since
moving here are all nice. My Landlord’s have HD in their family too.
How weird is that? Another fear I have is embarrassing my family
when I am eating in a restaurant. Alice figured out that yesterday.
She told me that it would never ever bother them and no matter
what everyone loves me. It is all right to have fears. They come
along with anything. What is not right is helping them grow. That
just wares a person down. People can’t take that much fear. Let all
of it go. Live. If we do have so much fear. It will not let us live or love
life as full as we should. Never healthy. Never be afraid to go
outside and live life. It does not matter what we appear to be. Once
we are out, it is healthy. When I tell Trevor that I am scared of going
outside. He said to me you are a fighter that is what he saw in me.
We can all fight. We are a hundred times stronger that you think.
We can do anything we want to. We are the ones in power. We are
the ones that can change. It is up to us. Take your life back. Get it
back. That is our life. We will not let HD take it from us. We have to
live.

Wednesday, March 5, 2008

Pandora Award

I am on my way to Nelson. Check my email. Guess what? Another
International award. It is a Pandora Merit Award. They are hard to
get too. So hard after applying twice I now am winning the ones that
I lost. It is weird winning these now. I was hallucinating last night. I
actually thought that I heard someone come into the house too. No
one was there. I was standing around doing my hair. This was scary
real. I thought someone else was in there and was going to kill me.
All of this feels so real. I grounded myself last night it worked
again. Thank you Lucky. We need to find hope when we are scared
the most. We have to. Fine the hope deep down. Things will change.
We will get cured. We will. It is not a question of it. It is when.Sorry
short this time. I am going away any time now. Believe in wanting to
generally get better. Physically and mentally.

2 more Awards

I spent all day making my web page accessible for disabled
people. I know all lot of them come here. Anyone can view it now. It
was hard to do. Ihad no idea what I was doing. I got it done now.
Everything is good now. I will not be here tomorrow. I am going to
Nelson BC with Alice. She is my Mother in Law. I will be gone for the
day and back at night time. I am so excited. I want to see Mountain
Goats like I did last time. I won 3 more awards. These are coming in
like crazy. I won a Glass Horse Award. It is beautiful. I have also won
my biggest honor on my site ever. It is a very hard one to win. It is a
5.0 Award. That is as high as it goes. I won a Keraoke Site Award
too. I can’t believe I am winning everything in my path.I am just an
HD girl. You can have a hope too. I am so sick and doing this anyone
else could. Never let HD stand in your way. I never do. If you can
never live out your dreams.Get over the fact that you have HD, you
have the mindset. All of you could do anything you want to. It is
possible for us to learn . Dream big.

Pelaqita Persians Award

I won their Merit site award. This one means a lot to me. They sent this:



Laudation: This site is dedicated to educating people about
Huntington's disease. The web master's mother had this disease
which is hereditary and she tells the story of the familial
background, shares stories, pictures, and the importance of
genetic testing, care giving tips, and much more. I have watched
this site evolve and it has improved with time. I hope to see this web
master continue her work on her site as she grows and learns
more.


I love every caring or inspirational awards, they all mean a lot.
Every award has it effect. I appreciate them all.Helping is what I
have this site for. I don’t know how I can do all of this sick. I believe
a hundred percent in it. I believe in changing lives. That is why I try
to never quit. Every person that comes here is a life changed or
saved. You can also do whatever you want to. Believe like I do. Put
in a hundred percent of everything you got. Never let HD stand in
the way. We can change the world and our lives. You have the
power too.

Tuesday, March 4, 2008

Another new possible cure

This breakthrough is huge. Phase 3 means so close to a cure. We
are so close. Don't ever doubt it. This is our year.


http://www.earthtimes.org/articles/show/avicenas-hd-02-to-proceed-to-nih-sponsored-phase-iii-huntingtons,311863.shtml

Monday, March 3, 2008

Hallucinations

Last night I had scary hallucinations. It was auditory and visual. I
heard weird voices and saw black scary dragon like creatures. It
was like black light with life. It was scary. I have had the same one
3 times. When it is dark. I grounded myself and put my arms around
Lucky. It is holding onto something cuddly. If you are alone you can
do it with a Teddy Bear. Takes away all of the fear. I almost fell once
in the bath tub. Once on the coffee table. I keep catching myself.
That is still my reaction. When I was first got sick, I went fell down
20 stairs. As I fell, I instantiously grabbed the bar. Saved myself. I
get these quick responses from my Dad. He works in the Oil Field
all of his life, with EnCana. He knows first aid. My Dad used it so
often. One time he was driving to work. He saw our neighbor’s
truckon fire. He had an extinguisher. Put the fire out. I never had to
use mine yet. So scared of using first aid for the first time. They left
my Dad a note and beer. My Dad returned it. He did not think he
should get award for that. I think as I get sicker I will probably lose
this ability. Right now I am fine though. I have to accept change. WE
have to accept change every day if we have HD in our family.
Whether you are family or have it. Sadly change is a huge factor. It
is the hardest to accept. Especially when everyone goes downhill
so fast. If you can’t accept change that will affect your life
negatively. Like I said we need to accept before we can have a
positive future. Acceptance is key. Let all the HD go. There is
nothing we can do, we have HD. It is in the family. Forgive
yourselves and your family. Let all of it go. Unleash the burdens of
HD has on you. Do this and your life will improve. I struggle to. You
have HD, you struggle. That is what it is for. Be positive, be hopeful.
Whenever I have a bad day like two days ago. The thing that kept
through my mind was we will get cured. This won’t last long. Every
day is a fight that we all can win. Fight it. A thing that a sweet Lady
told Trevor and me that we make bad days ourselves. We get so
bent on having a bad day that it happens. I tried to use that two days
ago. It works. I think she is right.

Sunday, March 2, 2008

Lupe Bronze Award

I won another award today. It is a Brazilian Lupe Bronze Award. It is
another hard to win award. It is international too. Thank you for
honoring my site. I did something right. Like I have said before we
can learn new things. We can grow. Don’t doubt yourself ever. I
never do. We just let HD control our life and what we do. We should
never ever do that. Our life belongs to us. Take it back. Fight it away.
It is the quality of life that is on the line here. We need our life
back. HD will make us sick. That is for certain. We can still have a
great quality of life. We can have that. Just believe in yourself, your
life, your future. We are all stronger than we know. We can use that
against HD and get our life back.

Overslept

I have been getting sicker today. I had overslept. I found out that it
brings us the same damage as sleep deprivation. It made me feel
just as bad. I had extreme brainfog today. I also had a hard time
with my balance. I have a hard time spelling. I have a hard time
fixing my eyes on something. I have my Phsyio referral now. Gary is
on Seroquel the same med I am on. I think we are going to increase
my dose. It is not doing for my mood swings, paranoia, or
hallucinations. It is a really hard fight everyday when you are not
regulated. One of things I do to stop these feelings is listening to
happy music. Watch something. Distract yourself. Take a hot bath
anything to take away the pain. Because I have HD means I
struggle. It is how we deal with the struggle that makes the
difference. I need other coping mechanisms. We all do. I do still
count everyday as a blessing. I thank myself when I accomplish
something ordinary. Thank yourselves for every little thing that is
good. Just do anything. Take the credit. Credit is due. We can do
anything we want to. We just have to have faith in ourselves. Don’t
let HD be an excuse not to do anything. Even though it is hard. HD
should never be giving control. That is what it wants. It wants to ruin
or lives. It wants to wear us down. We all know how to get control
back on or happiness and hope. We have fight every day hard. It is
always be worth. To have a great life. Up in the clouds is the place
for us.Up in the clouds we remain.

Saturday, March 1, 2008

Still sick

I have been very very sick with a brutal flu. Yesterday was the
worst. I have antibiotics now so I am feeling a bit better. Still have
an upset stomach though. I have been having trouble dressing. I put
on things on inside out or backwards. It is something that I have to
accept. Not get upset over it. I have been feeling bits of anger too.
Accept that too. There is a future without HD and that is what we are
all going to look forward too. It will come sooner than later. Never
lose hope. This year of hope. This will happen and we will all be
cured of this brutal illness. There is always hope where you least
expect it.


Free Blogger Templates by Isnaini Dot Com and Architecture. Powered by Blogger