Thursday, February 28, 2008

Check out this link

I have my desktop back. So happy. The motherboard and graphics
card were broke. I used Trevor’s laptop for two months now. I have
been so sick with some kind of flu. I have been throwing up since
last night. I was contemplating not blogging. I can’t do that. I have
added so much stuff that I need to tell you. I have been noticing
when I try to eat sometimes for no reason I want to hurl. I think that
is HD. I know that we can have problems with our tummies. Last
night I could not sleep I was so paranoid and scared. I also have
bruises again all over my legs form the falls. I was really irrational.
I was thinking all kinds of crazy stuff. I am glad I am not at the stage
where I freak out and lose control. Sometimes it does happen
though. We have to accept there is nothing I can do but live and
love life with HD. We all should. Acceptance is the first step if
getting over and getting happier with any change. We have to
believe that things will get better and brighter. We will not die of
this disease. We will live. All the generations of HD will lose its
hold. I believe that a hundred percent. We are too good of people to
let die. Trevor last night said he was afraid of losing me. I told him
again I will live. I will be sick of maybe a few years, and then we will
be cured. We will learn a lesson in strength and bravery. That’s
what we are every single day. Most people don’t notice it. I do in
every person that has this affliction. I am a Phenomenal Diva. They
are an offshoot of the Phenomenal Women. They just started up. I
added a hope graphic form them. It is what I have to give to
everyone that comes here. I would love to thank everyone that
comes here. Every new person that comes is shown hope here. How
to move on. I had to start something positive instead of everything
negative with HD. We have it accept it and just live like you are
dying. Every day can be special. I just puked now. This is how
dedicated I am to helping people! I get this up and I will rest.I
added a new llink. It is Organized Wisdom. It is a good HD link site.
It has links to all other diseases too.

Wednesday, February 27, 2008

Forgiveness and Love

Forgiveness is necessary with HD. We all need to exercise this a
lot. Especially with HD. Every thing we do that is part of HD, forgive
and accept it. It is part of HD. I have been noticing a bit of anger in
myself too. I need to forgive myself. It is good to have a family that
understands us. No matter what I do my family will still love me.
Some times there are people that don’t understand you. It breaks
my heart as a former Nurse who accepts everyone. We need more
love and forgiveness in our world. We need patience especially
when we spill something, like I have been doingfor days now. I have
been getting very anxious too. Still trying the tic tacs like they told
me. You take one every time you have one. It is a placebo effect. If
you are alone and have HD. Love yourself so much it makes up
for everyone else. You are all special. As a Nurse you see that a lot
in Nursing homes. They ditched their family in there. It made me
love them more. That’s how it was with my Mom. She called me her
salvation. Though my brothers and Dad visited her every week
when she was in the home. I will always love my Mom. That will
never go away. At our wedding I put up a picture of her with flowers.
That made my family cry like crazy. They said she would be proud
of me. Since I found I had this I feel her presence. I am sure Gary
can too. She makes me feel we will be cured. This time. We need to
forgive, love, accept, and have patience. With everyone. Especially
yourself.

Tuesday, February 26, 2008

Gay Rights

Today I won’t be blogging all about HD. Not when it involves basic
humanrights. They have been tossed for a gay boy. I am blogging
about the poor 15 year old gay kid. He was bullied extremely He had
harass someone. They went to school and someone shot that poor
kid. He is getting charged with a hatecrime. He is 14 and will get
charged as an adult. Since Matthew Sheppard’s cruel hate crime.
Which I have that erase hate banner for. I was hoping that this
would never happen again. There was one sweet girl, whenever he
got made fun; she told him it was not his choice. That is me. One
straight girl defending their rights. Everyone rights. We all need
them. I emailed every MP in Canada to help get them marriage
rights. They wanted me to become a Gay Manger of that Equal
Rights Organization. Ask anyone. I always since I was 13 I was
handing out petitions, which I made up to fight Fetal Alcohol
Syndrome. I had gay friends I defend too. I just wish all of the hate
in the world would just disappear. Sadly it won’t. We need to learn
tolernence. For everyone including people that have HD too, and
the poor gay community. For every gay, how we get through this. We
just have hoped that things will get better. It is like having HD,
walking down the street afraid of how people perceive you. That is
what is like to be gay. So afraid to express yourself and be proud.
Be proud of yourself no matter what you have no matter what your
are. We all the same underneath. Brothers and sisters. Same
color and same creed. Accept and learn how love yourself. We
need to get a world of acceptance, kindness, and understanding.
That starts with yourself. HD or gay or sick.We feel the same way
about people reactions o us. I went around and told everyone here
that I have HD and am not an alcoholic. Life would be easier with
out these fears. It is nothing we can change. We have genetic
illnesses. They both are. We just have to hope that things will get
better.They have too. This reminds me of a funny voting incident
with Harper. This was before he was elected Primer . It happened in
Shawnessy Calgary AB. He wanted to cut out stem cell research
funding for 3 years. I was so upset I made a sign that said
are Killing Millions of People ask me why? A lot of people
called me and then came the shirts. These were so funny. It said the
conservatives are killing me. I went to vote and at 10 in the
morning. I had no idea Harper would vote at the sametime as me.
Everyone’s face dropped. No one said anything. It was the funniest
thing ever. If I was healthy I wanted to be a Politian. I have a friend
here that might live out my Dream. A stem cell and gay rights
party.I would love to see Harper’s face then. How fun would that be.
Scotto might too.If he does not have HD either.

Sunday, February 24, 2008

Porcupine

I have a bad fever today and an upset stomach. We are hoping it is
not mynew meds that are causing it. I added Lucky to my story
page. I can’t not blog for two days. After this I will lay down. I added
those poems yesterday. It made me feel better. I do though. I am
back to me hopeful self a hundred percent now. Yesterday my Dad
told me to stay positive. I am ready to talk about the fun moments of
going home. We took Lucky with us. He puked all over Trevor in the
vehicle. So funny. My family thought he was Porcupine. They all
think he is a good sweet cute dog. We went ski doing. Trevor drove
for the first time. Gary drove the other. Today he gets his meds. I
took Lucky to the graveyard where my Mom could see him. It was
covered in snow you could not see anything. She led me to it. I
just knew and wiped it off and found her. I know she is proud of my
site. My Dad visits it regularly. My HD comes and goes. It gets bad
and then it is less. The last 2 days you could not tell I was
symptomatic. Instill hope and happiness in your head. Leave it
there. Do not let HD get that out. This belongs to you. We are the
ones that have to fight for normalcy. I know how hard it is and so do
all of you. Don’t give up your dreams and goals too. Make them and
don’t break them. Really live them and live your life the happiest
and fullest. Never ever give up and let HD take over your soul.

Saturday, February 23, 2008

More and More updates

I have been still up and down since I found out. Even though I have
known it for 2 years now it still a shock. I had trouble eating this
morning. Now that drowning feeling is back too. It feels like I am
snorting water with pain in their too. I am having trouble dressing
last night too. I don’t know how I honestly do this webpage. I am
very detrimend to give everyone a dose of hope. Working your
mental brain like I am doing can help with Dementia with HD.I
changed half of the graphics and added a horrible fact on my info
page. The reason I went to school to learn graphic and web design
was exactly this, it is something that I can use when I get sick. All of
you should look at options. I wish I had the idea sooner, especially
since and this scares me too, we have the highest suicide rate out
of any illness. If I can help one person have hope and not think of
hurting themselves then I have done my job. This one scares me. 4
people a day are diagnosed with HD. How scary is that. Someone
that has come here on support group said make some writings. It
really worked out the fear. I did I made two of them. Good idea. I am
going to get Trevor to help me put them up and make graphics. I
will make one to show him and he can make another. I am so happy
with my seriquel. I actually have tons of energy. On my zyprexa I
was so sedated. I want to jump around now. Trevor said I am my
old self now. He knew me before I got on that sedating med. We
have to see if it takes away my hallucinations. I have adverse
effects to the Rispidol they had me on last time so we had to be
careful. That put me in the hospital. We will never let this page die,
even if I get to sick to take care of it. Trevor will do it for me. It has
too of important message. I am sadly and it is scary the only dose
of real hope you have everyday. That is why I started this. No hope
for HD until I came. That’s what made me do this. We should never
let HD burden us and take away our hope. We need to let all of the
HD go. We can defeat HD if we try hard enough. I am trying my
hardest right now. We can make HD weak instead of us. Let’s do it
together. Live out your dreams too. Don’t ever let them die with HD.
Don’t let anything die with HD. What gives HD the right to take over
and change us in to a no hope situation. We will always win in the
end. We will get cured in the end. There is hope all over the place if
you just look.

Friday, February 22, 2008

Possible New HD Treatment

There is tons of hope today. Tons of good news. Makes me excited.
We are so close to a cure.
http://www.upi.com/NewsTrack/Science/2008/02/12/new_compound_might_help_fight_huntingtons/4501/

Another new possible cure

Another huge HD breakthough. This is our year. I swear it is. We will
have treatments and cures.
http://www.sciencedaily.com/releases/2008/02/080204111749.htm

A Fight for a Future

I had a big fall yesterday. I keep leaning into things that are why
Trevorsays I fall. We are going to ask the landlords if we can put
grab bars into the bathroom. The funny thing is they have HD in
their family too. It is a small world. I warned all of my family that I
had HD and would come back positive. I am so happy to know that I
have it now. It is hitting my Trevor still the hardest. He has been up
and down like me when he is at work. Don’t hate HD. I don’t. Accept
we can’t change it. We will fight it with all of the ammo we have. I
have to fight it with everything in my being. The fightis more ever
important now than it was ever. Gary was so depressed when I went
home. He has not done any self care since he found out. That is why
I need to fight for happiness, for hope, for a life worth living. I can’t
afford to get depressed and stop caring. I need this time to fight
harder than ever. Fight with me. Every smile is worth it. We need go
find a hope and a world worth living for. Worth fighting for. We need
to build that morethan ever. Make every day worth it. Every day is a
new fight. Keep that fire inside. We will need it when we hurt the
most. Learn to live again.

Thursday, February 21, 2008

Surviving

I updated my story and my HD information page. I have been up and
down today. I got support from 2 of my best friends here in Creston.
Elissya is my Dog’s Godmother. Every day we take Lucky for a walk. I
managed to do aerobics even though I felt so bad. We have to push
through this head space. Fight fight fight. I have been really out of it
today. I am fighting off the depression. We can’t let it build and take
over every past of our lives. We can lose it all by giving it up. Trevor
is taking this worse than me. He does not want me to get sick and
die. I told him that I am going to live. We are going to live. Just
believe. Just live. I have to live and move on. I knew I had this for 2
years but it is still a shock. I’m glad to know now. We can never lose
our hope for a better future with no HD. I won’t. We will live. We will
be cured. I think stem cells will be the first one. This is still our
year even with my diagnosis. I still believe that. We deserve to have
a good year. We deserve happiness. We deserve hope. We deserve
happiness. We deserve good will. Let’s claim all of that for
ourselves. Take it back.

This is a hard blog to write

This is a hard blog to write. Even though I have been experiencing
HD mental symptoms for two years now. They could not diagnose
anyone who does not fail the neurological test. I passed it last year
perfectly. They also needed me to ask if I had HD, otherwise they
would not tell. Now I knowit. I have been experiencing: drooling,
choking, eating problems, twitching, brain fog, falling, unbalanced.
I had these for a year now. It has been a year since I have seen my
neurologist. I knew I had HD before this.I told people this I knew I
had it. I know the symptoms. Especially being it Iam a former Care
Aide. Today I failed all the tests. I also lost 30lbs. I am only 24. They
told me I am in the first stages of HD. I also had to tell them I wanted
to know. They would not tell me otherwise. They were very very
concerned about me. I am going to physio to help my balance. I am
also starting Seroquel to get rid of my hallucinations. Now my
brother and I are diagnosed in the same month. My Dad this is has
to be horrible for him. My husband and I were in tears. He said he
would never leave me and that I am his hero. I have been up and
down since finding out. There are negative thoughts in my head.
They are I am just going to die. I am too young. Then the hopeful
side takes over. The real me. We will have cures. We will have
miracles. There are so many breakthroughs right now. So much
hope. It is hard to ignore. Let hope flow through us like a stream of
good feelings. We will not DIE. We will suffer for a bit. Then comes
our cures. There comes our hope. Never lose. I will fight everyday to
never lose it either. This happiness belongs to us. We have to make
it ourselves. It is a struggle, but always worth it. I know now how
hard this illness is. For 2 years now. It is hard just to survive. No one
but us knows it. I am still going to do aerobics and walks. They are
more important in the first stages. I am accepting this diagnosis
and moving on. That is when we can truly live. That is where the
light comes from. We have to accept HD in its entirety.

Friday, February 15, 2008

A Fight for a Future

I had a good V Day with Trevor. He is worried about me getting
sicker. I tell him we won’t be sick for long. We are do for a miracle. I
stayed up a lot working on this page to distract myself. This
funniest hallucination and paranoia I have ever found. I don’t like
GW Bush. I thought I heard sirens and I though the police were
coming to get me. I thought they thought I was a terrorist. How funny
is that, it was so real? So funny. I talked to one of my best friends
Elissa, here and she heard the sirens too. But the way I reacted. You
have to get a laugh to ease all of the pain. Laugh moreand you will
live more. Stay positive and live life. That is what life is for.
Enjoyment not pain. Laugh away all of the pain. We need enjoyment
Pure enjoyment. Have fun. I added some pictures in the photos
section. I added wedding photos and a Lucky photo. I have been
having the worst problem with hit counters the past 2 days. I did not
want to go home without one. Finally got one working. I was
researching and I found this great acupuncture article. It helps
elevate the symptoms of HD. Sounds good. I have heard good things
about it and know people who have it done. It is supposed to help
us emotionally too. I am going home tomorrow so excited. 3 days at
my Dads and the 2 in Calgary. We go to his Aunt’s house. My social
worker Loretta Young is retiring this year. She has been the
most helpful and sweet and knows her job so well. We will miss
you. I know the new one will be amazing too.

http://www.emediawire.com/releases/2006/7/emw406188.htm

Thursday, February 14, 2008

Happy Valentines Day

Happy Valentines Day to everyone. Share it with your loved ones.
Trevor has a surprise for me later. Who knows what he has planned.
Enjoy this day. Enjoy the time. Enjoy it. Don’t let HD ruin it for you. I
have found out that Gary is going through a lonely period now that
he has HD. He is jobless; all of friends are working and too busy.
Scotto stops by every week to check up on him. At least Gary has
Dad. He lives with him. We are going to see if Gary will come back
to Creston with us. I would still take away his HD if I could. Not
everyone has the positivity and strength like Ido. I keep calling him
and giving him hope still. We all need that. Hope can make the
difference. It can change everything. Don’t ever stop dreaming
of future. It will happen. We will get cured. This is still our year. It
belongs to us, not this horrible illness. Take back your life, take
back your happiness. Take back your hope.

Happy Valentines Day


Wednesday, February 13, 2008

Award

I won another award today. It is an awesome site award. Thank you
for honoring my site, every one still means a lot to me. I don’t know
how I could make such a great and helpful site. My husband and I
say every person that comes here is going to have there life
changed or saved. I am Rimbey and Calgary this Saturday. See my
Doctors and my family. Will be gone for 5 days. No updates for that
time. I went to Cranbrook yesterday. Trevor’s Mom Alice came. She
surprised me with a hair appointment. Trevor did not know. You
should have seen his reaction to my hair cut. He has met an HD
family there. He does not know what to expect. This nice guy will
takes us to meet his Mom. Sounds good for my Husband to prepare
for when I get sicker. Lucky was doing aerobics with me again
this morning. Everyone doesn’t be afraid to live life. Don’t be afraid
of HD and what it brings. Don’t let it take over us. We have to let the
good back in our lives. Don’t let the good leave. Let the hope rise.
Let it take over. We need the hope so bad. We don’t need HD
controlling us.

Monday, February 11, 2008

Top 100 Chronic Disease Blog List

I am now on a blogs top 100 Chronic Disease Blog list. They were
combing the web and found my HD site. They loved it and put it on
there. This is what a positive HD site can do. I had to change our
perspectives on HD. It is not all bad. There is so much good. I am
getting the effect I want. To show us we will be cured. We do have futures. Fullfill every dream. Make a destiny. Believe a hundred
percent and you can achieve.

Facing Fears

Every day I get more irrational and stubborn. I had hallucinations
and paranoia very bad. I thought I heard noises. Trevor took Lucky
out for a walk last night. I thought he was going to die or get hurt. I
can’t remember my hallucinations but they were so scary. It is so
hard to fight when you have to face odds like this. We have to fight
so hard everyday just to have some semblance of a life. Let’s live
and fight like never before. We are fighting for our lives. We can’t
pull out. I am going home next Saturday. I am going to see my
family and my HD team. I will take a week’s break from my page.
They get to see Lucky for the first time. Be there with them now
Gary’s sick.

Sunday, February 10, 2008

Another Award

I won another award today. It is a Web Excellence Artistry Award. It
means so much for me to win awards. Everyone given to me has the
same effect. I enjoy getting all of these acclaims. Not bad from a
very sick woman. I don’t know how I do the things that I do. I never
doubted that could do this. Not once. Don’t ever doubt yourself. We
can do anything we want. Just don’t doubt yourself. Accomplish
everything you set out to do. Don’t ever let HD get in the way. Never
say never. Always say yes. We can be everything we can be. We
can. With or without HD.

Saturday, February 9, 2008

Dream

Dream big. Dream of a future without HD. Dream without blinders
that HD has bestowed on us. Free your mind of possibility. Of a
future where we are all free. Of HD. Of this disease. It will happen.
Just believe in miracle cures. Believe in better treatment. Better
quality of life. It will come. Nothing would be sweeter than having a
functioning cure. We have to believe that with every breathe we
take. They will take time but they will come. We will have a good
quality life. No more generations without hope. All will have hope.
No more tearful generations with out life. We will have
it. Soon all the pain will be over.

Wednesday, February 6, 2008

MoneyWise

Trevor and have been going to a government program in Canada. It
is called moneywise. We learned investing, budgeting, goal
sitting. All of kinds of great info. The best part is the Adapt program.
It is run by the government. It is an investment program. For every
dollar you put in you get 3 back. There are 3 things you can use the
money for: School, House, and Business. Trevor and I are going to
buy a house. We think we will get accepted. We finished the
program yesterday. It was effective. Learning all of that stuff proves
once again, we can learn. I had to concentrate a 100 percent. Don’t
stop believing in yourself or your dreams. I never thought we could
get a house and here we go. When it came to goals, Ihad more than
anyone else. Goal setting is a great way to live life. There isso much
I want to do before I get sick. Live it to the fullest. Dreams are
important. I have a plan of what to do when I get cured. It will
happen. Dream big. Don’t ever stop.

Cranbrook

Yesterday we went to Cranbrook. We went shopping with Alice. We
had dinner. That is when the hallucinations started. They were real
this time. I was in the bathroom and the door opened. while I was in
there. When I went to get out I was locked in. It was so scary. I am
slowly getting irrational. Yesterday Alice had to cut my food for me.
I am so getting sicker. It does not help that I have not had a good
sleep in 3 weeks. Sleep is so important. We need lots. I was
drooling yesterday. Trevor has been noticing me getting sicker. He
is petrified of me “dying”. I told him that we will get a cure. I believe
that a hundred percent. I believe we will have it soon too. So many
breakthroughs. Don’t lose hope. Never lose faith.Things can only
get up for us. It is our time. I believe the first one will be stem cells.
Keep smiling. My heart is going out to the States right one and
all of those tornadoes.

Monday, February 4, 2008

Another new possible cure

This is OUR YEAR!!! We will get these cures and treatments. I feel
we will get more breakthroughs ths year.

Snowshoeing

Yay… My team won the Super Bowl. I get Pringles. We were yelling
so loud our neighbors could here us when New York won. It was
great game. We did not think they would win it. Today I went
snowshoeing with Alice and our dogs. It was so fun. He did not pee
on Abbey this time. It was a nice day for that. I l love snowshoeing. I
have done it twice, but it is so much fun. I am going home in a
couple weeks. Go to Calgary to see my HD team. See my family.
Lucky gets to meet my Dad and brothers. I am excited to go home. I
was choking this morning when I was drinking juice. Laughed it
of. Why let HD take that goodness out of our lives. That belongs to
us.Don’t let HD take away everything dear to us. Don’t let it win. We
are the ones that have t fight everyday. It is exhausting. We have to
fight everyday. I have to fight everyday. Every smile takes so much.
Every laugh too. It is always worth to fight HD. I added ways to
prevent falls onmy Caregiving Page.

Sunday, February 3, 2008

Super Bowl

The past few days I have been noticing me getting slowly and
slowly sick. I accidentally fell into our coffee table. I broke it. I
have been falling into the walls. Huge brain fog. I have been
spilling every drink and most every meal. Last night was a scary
night of hallucinations... I had 2 of them. They were so scary. I try
not to let this get to me. Why Worry? Why get scared? We are
strong to withstand this disease. We will be alright in the end
when that cure comes. Everything has to get better. It has too. We
are way too good of people to let this happen too. We are going to
win. Hope is the word we need. It is everything for us. It is. Simple
hope for the future can do so much. I have a super bowl bet. Every
year I bet with Chris Trevor’s and mine brother in Law. Last time I
betted for Da Bears and they lost. I lost a penny. This year I asked
my Dad who would win. He said Da Giants. There are Pringles on the
line. Scary bet. I grew up in a football family. They are all running
backs. I was the only Quarterback in the family. Nobody thought I
could play because I was a girl. I showed them. Scotto, a running
back, was so good he got invited to spring training in Red Deer. He
broke so many High School records. I changed the HD Info Page.

Friday, February 1, 2008

Mom

I have been spilling everything and falling lately. I don’t let it worry.
I will tell you why I know a cure is happening. 2 days before my
diagnosis, my Mom came to me in dream and said that I had HD.
She said I would be in sick for few years. Then there will be a cure.
She said she loved me. When I found out I went back home and
went to her gravesite. I was in tears. I thought this would be me in
20 years. Then a peace went over me. I felt my Mom. She let me
know that we are going to live. I believe my Mom. We will get cured.
She told me that I had HD before I knew that. That’s why I believe the
second one would come true. I told everyone about that when I
found out I had HD. That’s why I was so happy with my results. I knew
already. Never lose any hope for our future, It will be ours. I trust
my Mom. She knows. I know every time I go to her grave I do still
feel her there. I think she would be so proud of my site and
everything I have done. I know at my wedding I put up a picture of
her surrounded by roses. My family thought it was so touching.
They were all in tears. Whenever I think I can’t handle HD, I think of
my Mom and how brave she was. If anyone has doubts think of your
brave family members. They carried themselves so well. They
should be cherished in your memory.


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