Hope

All of my Doctors are going to have a family conference so
that they can think of ways to help us. Trevor’s Mom is pulling
away from us. She has been doing it for three months. She
wants Trevor and I to separate. She ditched me in the
hospital. Promised me she would come. My Dad was going to
come and take me home for a bit. She never did. All we really
have is my Dad right now. When I was hospitalized, that is
when she tried extra hard to part us. When I left I did not
know if I had Trevor to go home to. She is trying to break our
vows. He told me no matter how bad things would get he
would never leave. My Dad is all we have. She went on a trip to
Mexico. Never came back the same. She avoided us. On Friday
I get to talk to a home support worker. We are going to
organize everything. They will give me time to do my site.
They will be here in the morning for meds. We get 5 days a
week free. That is good. With all of these problems. All we
can do is hope. Things have to improve. We have to believe.
Believe in life and being HD free. It is hard to have this
hanging over our heads. We have to cope. I believe that
everything has to get better. Believe in our happiness. In our
joy. In our laughter. Believe in all for the good things that will
come. The good things that have. All good things will never
die. Hope will never die also. Hope for our future will never
die too. Always have that. Having all of that will help you live. We will win.

Another Award

I won a huge award. This is like becoming on the top 100
Disability/ Disease blog list. I did not apply. They found me. This is
huge. I won the Disability Newtook Award. I had no idea I would win
this I am so happy to have won this. I started something positive for
a change. I am being rewarded like crazy. I can win all of this. It all
still about my mission. All of that takes a back seat. If I have helped
or changed one person lives that is all I need. Live and love your
life. All of you believe in yourself and you can do anything. When I
do this I don’t question. I just do. I want everyone that comes here to
know that things will get better. There is real hope here. Real hope
for us. We will get cured shortly. I wanted you to have hope for the
first time. Don’t be afraid of HD. It won’t be sick with it long. Just
believe a hundred percent in our future, without HD. It will come
sooner than later. We can have our miracles. We will have them.
We will have our lives back. There is o much hope now. Just believe. We can also do anything we want to.

Scary

I woke up at five in the morning. Trevor’s vehicle and
everything were there. I could not find him. I went outside to
look in my pajamas. Went back Trevor was there wondering
what I was up to. Scary. Yesterday I accidentally flooded the
house. I was doing dishes. Left the leaky tap on. Went and
had supper with my husband. When we got home. It was
flooding. I am lucky that he does home restorations. He knew
exactly what to do. Today I am having bad chorea. I am having
a hard time walking. Last night I had bad dreams. I saw
snakes and spiders in them. Woke up and ran to Trevor. I was
scared. I almost fell. On Friday I meet with my home support
worker. I was scared of getting home support. Not anymore. I
have accepted it. I am getting sicker. That is the way HD is.
What makes the difference is how we view our life. We must
always see happiness and hope. Our life should always be
worth living. This is all we get. We have to accept. Move on.
We can’t change HD. We can fight it. We are going to get
cured. It all about how we want to live. How we chose to live.
All we get. We have to make sure we create something worth
living for ourselves. We are the ones that can choose that.
Set some goals. Make those goals. Live your dreams. They
means so much when you are sick. You actually have things
to live for. You are the one that can shape your life. Not HD. You have the control.

Hope Flows

The past three days, I have been healthy again. It is weird for
getting so sick and so healthy. Yesterday I was eating. I saw
bugs in my soup. Very scary. I thought they were real. I have
been falling still. I have been walking around on the back of
my feet sometimes. That is what Trevor says. I did that going
down on stairs. Now I constancy walk. My best friend came
over twice this weekend. She lives downstairs. They are like
or second family. Let’s learn to live again. Let’s learn to hope.
The best is yet to some. The best will come. Never lose sight. I
have already planned my future. I believe a hundred percent
that we will be cured. We get closer and closer. Every day we
do. We will have our lives back. We can live HD free. It gets so
close. Never surrender. Never give up hope. Never give up our
happiness. Our joy. That is something that can help us keep
through HD. We can fight you. We will win soon. You will be no more.

Remebering Jenny

I miss my Jenny today. I have really been through the grief gauntlet.
Mood swings and depression. I will make her page soon. Trevor
needs to set up my scanner. Why do they have to take the young
ones? I knew the other boy. He was 14 years old. I see busses on TV
or here. I remember all of the news broadcasts. That is all I see. I
know all of us have seen it. That has traumatized all of us. I am also
happy and sad. She bought her grad dress. They also were planning
a trip to Disney Land when she died. She loved Disney. Everything
about them. I am so glad they left my family alone. Thanks to me.
We both loved animals to no end. She would have been the best
veterinarian ever. I used to babysit her all of the time. She had a
smile that lit us all up.

Home Support/ Watch Out For M

My Lucky looks so cute. I am going to put of pictures of his little
haircut. The woman did show dogs for years. She worked on our
Lucky. I am still a bit scared of getting home support. I have a huge
problem remembering my morning meds. Most of my problems are
memory. I work on Monday. The life alert is something I wear.
I hope my meds work. My Dad is going to pay for our home
support. Thank you Dad. Especially now me and Trevor can’t get
benefits. The excepect him to look after me. They don’t realize how
tough it is. I am having big changes now. I have to accept this. We
will all get sick. We are sick. The difference is that we will get
cured. There is nothing greater than the knowledge. Run that
through you head. We are going to be saved. Our lives will belong to
us. Never lose hope for our future. We will get there. It may
take awhile. It will be worth it. We can get there. We can have our
dreams come true. It will happen. Never give up hope. I have to
warn anyone in an online support group. There is a woman know as
M. She was banned in some of the other groups. She is in the at risk
one. I go in all of the groups. I help people that are in crisis.
They need so bad. I answered a girl who is scared of HD. Helped her.
I don’t want to repeat what she said.

---

Everyone reacts differently to the results - whether the results are
positive or negative. Some people are better able to handle
hearing that they are gene positive; others react negatively to
hearing they're gene positive (turning to alcohol/drugs, lashing
out at others, trying or successful committing suicide); and others
have a different reaction to even testing negative (especially if
other family members have tested positive or are still at-risk).
You'll never truly know how you'll react until you get the
results...some are willing to take that chance and others are
perfectly fine living with their status as being unknown.

---

She made everyone on there more afraid of HD. This really bugs me.
We have the highest suicide rate for any illness. We already have
people terrified. Why would someone make it worse? This is the
reason I am fight for your right for hope. Your right for a future. Don’t
listen to her. We not need to fear HD. It is not bad at all. If you are
scared. Think of the possible future. Getting diagnosis of HD does
not change our life. Still live. Still fight. I am in home support and
still telling you it’s going to be fine. Don't let anyone tell you
anything but the hope that we can have. Never lose sight of how
impotant every life is. Our lives are important.

Home Support

Today I had my home support assement. It lasted for 4 hours. They
are going to come over every morning at 10 in the morning to take
my pills. I can’t remember the meds. They are going to come clean
and help with dinner. An Occupational Nurse will come and help us
get bars out where they think we need them. When Trevor goes on
respite. I am going to be looked after by a member of the staff. I am
getting life alert. Everything went well. I was really scared. I had
hallunctions like crazy. I am also feeling a bit of anger. I know
these meds take a while to work. Today is Lucky’s first hair cut. I
need to accept this. It is hard. We have to roll with the punches. We
never need to lose faith in our future. We well have the day we been
waiting for. It will come soon. This is our year. I still believe that.
We can never lose sight of our future. It is ours for the taking. We
will be able to live again. We can live. We can live now. I am living
even though I need home support. Take this strength from me to all
of you. We need to be strong. We need strength everyday to fight the HD we can. We can be stronger than HD.

Home Care Assesment Tommarrow

I’m having a homecare assessment tomorrow. I am petrified. I am
so scared of losing my independence. We knew this was going to
happen eventually. This won’t affect me blogging. Running this all
of my life. Even if I am incapacited. I need to help everyone here
live. Igave you life. I am not going to leave. Lots more to learn. I
have to accept home care. There is nothing I can do about it. Just
believe there is a cure that has our name on it. We will not be
forgotten. We will have our time to live in the pure light of
happiness. We will get there. We will be cured. Don’t ever forget
that. That is what we struggle for everyday. Hope. That is the word.
Don’t ever forget it.

Day Off

I took today off. I feel like I could not help today. I went to
work for half an hour. They had boxes all over the floor. There
was a little path. I almost feel over a few times. I was
confused. Did not know what they wanted. I also got into a
trance. I talked to Gary. He could barely talk. He is getting
that sick. So young. It hurts me to see my family get sicker. All
younger than me. I did everything I could to slow my
progression. Aerobics, walks, and green tea. It is hard to
know you have to slow progression it hurts you if you put of
testing. The sooner people get tested. The sooner they can
help you. They can help slow the progression. Give you extra
years. We need to fight this disease at all costs. Just never
lose site of the picture we can live our life the way we want
to. We can have ourselves living and loving ourselves. Fight
back HD’s grip on ourselves. This is us. We don’t need HD
taking our life away. Fight HD away. Don’t let it take your
hope. That will always be there.Every day do aerobics. It is
very improtant for us. You can do it. Go for walks. Build
nerons.

Happy Earth Day

Fight

Today I worked another 4 hours. I was exhausted. I got
confused a few times. I had no idea what was going on. I
hallucinated. I saw the work van. It was no one there. Trevor
is going to get his Cisco Certs. That is his exam. I have been
drooling again. I am huge sugar cravings at night. I go crazy.
So hungry. He has his books and his routers to work on. Part
of the exam is applied. I hope he can get them. We all have a
huge fight ahead of us. One that takes such great strength
and courage. We have no choice. We can’t give up. We need
our life. This is the battle that only we can understand. Every
day is a new day to fight it off. HD tries to suck us out. It tries
to take our souls and sprit. It will. We can’t ever give in. This is
ourselves we are fighting for. We can win. We can save the
goodness in our life. We can hold on. We can win. Never lose
hope in defeating HD. Every day brings us closer to real
breakthroughs. We have reason to live. We have a reason to
fight. Our life is on the line.

Another new possible cure

This is a new med that fights demintia. Lot's oh hope today. How can
you not feel it. We get closer every day.

http://www.medicalnewstoday.com/articles/104558.php

Stem Cell Information

Info on stem clell miracles. With all of these breaktroughs, how
can we not believe. It will be the first cure.
http://www.medra.com/index.htm

Working Hard

Today I worked 3 hours. It was not that bad at all. Every day this
week I work. Trevor’s Dad said I could come any time I want. I find a
hard time getting out of bed. I am so exhausted. I am going to get
sleeping pills. I have not slept well in two months. The last two days
have been really HD free. They have been better. I changed my hit
counter. I always have problems with them. Everyone here needs
hope. Hope is surrounding us. We have to realize it is there. We
have access to hope every day. We have to take advantage of that.
Without hope. How can we live? That would be not good life, if you
never get hope. Believe. We will be cured quickly. This will all work
out in our favor. We can actually have hope. I have taught all of you
that. Don’t ever lose that. That belongs to all of you. Every life I save
on here will always mean a lot to me. You can all live now... That is
why I will always be here giving you the daily hope. Just because
we have HD does not mean we can’t love our life. Build your life up.
Build your hope up. If you have HD it is a reason to fight for the right
to love your life. All we have. All we know. We change them. We can know the truth of the is matter. We will be cured.

Work Tommarow

Today I had ran into everything. I ran into the doors and
everything. I also had a bad hallucination. I saw a dog in car
that was not there. There was no dog there. I have been
drooling again. I have not remembered my meds in a couple
of days. I went out to lunch today with my neighbors. Lucky's
godmother and her mother. We met another Lady there. I
miss Jenny. I am still in a shock. She is actually gone. I am
trying to get that humans right person. I have the number. I
will get a hold of them. They will face jail time. I work
tomorrow again. I need to do what I can. While I can. We need
to never ever give up. Never let HD steal your quality of life.
Never let it take away everything you hold dear. We must
fight HD all of the way. With all of the inner strength. We can
do it. We can win. We can take back our life. This is all we
have. HD or not. This is all we have. These moments are what
we are fighting for. These moments make our life worth the
fight. The fight is always worth it. We have a life to live for. We will have a future to live for. We will be cured shortly.

Silver Award

I won a big international award today. It is a Rudolf’s Wander-
Award in Silver. I feels good to win more big awards .
Everything I win becomes better and more prestigious. I was
in Cranbrook shopping today. It was fun. I was confused and
had trouble going into the bathroom door. Today I had one of
those painful foot seizures. They kill. I got an interesting
email today. It from a group of medical HD Doctor students.
They want to make posters. They asked to use quotes from
my blog. Get the positivity out to the masses. Let them see
what is like in our shoes. It is not easy. It is not what we
chose. We have to live our life the best we can. We can have
a more fulfilling life. We need to get there. That is the hard
fight. Just fight every minute of everyday. That’s all we can
do. Never let HD gain any ground. We cannot let HD win. Our
strength will stop HD in its tracks. We have the strength of a
million men. We can defeat HD’s control on our life. I found an
article my Dad sent me on how the press needed to give us
time. It is taxing on everyone in Rimbey. Anyone that knew her.

Work

Today I worked for them first time in years. Trevor’s Dad has
a job that takes lots of people and is really easy. There is a
senior’s apartment building that got smoke damage here.
We have to clean all of their items. I work next Monday. I feel
so exhausted. Today I helped them, move everything.
Tomorrow Trevor and I are going to Cranbrook. We got our
tax return today. In Canada every disabled person if they are
married. We get 40 a day. We have a huge one. I will work
again on Monday. I am so exhausted. I have not worked in so
long. I have been drooling badly the past two days. I have
been falling and tripping too. My husband noticed that I have
been walking on the back of my foot. I had the hardest time
dressing today. I have to accept the facts I am getting sicker.
We are all getting sicker. We can’t not deal with that. We
need to deal with HD head on. To survive and have the
normalcy that we deserve. Nothing comes out good with
denial. That never gets a person anywhere. We have HD.
Accept and your life will get better. Be less afraid. We will get
sicker. We will get cured though. It won’t take long. Believe
me. We are planning to spend some of that money and going
to Kelowna. Live your life. Love your life. It is all we have. Live it
like it you would of you were healthy. Never give up your right
for a great life. A happy life that is yours for the taking. That
belongs to you. You have to claim it. Don’t let HD take that away.

Coming Clean About Cranbrook Hosptial

Yesterday was Jenny’s funeral. 800 people showed up. The
press showed up too. They promised to not take some
photos. My Dad said it was huge. Wish I was there. I am
upset. Never forget our Jenny ever. I will always love you
and treasure your memory. I am upset. I am struggling. It is
time I let out the truths about that hospital I was in. I thought I
would gloss things over. My family comes here. I wanted
them to think it was good for us. It is time for me to tell you
the truth. They did not tell anyone family they were getting
discharged. I had no one to get me. I got a hold of Alice. She
told me to get on the greyhound. The Nurses knew that. Then
my Dad called. Him and Karen would come from Rimbey and
take me with them. We had not heard from Trevor. My Dad did
not want me to be alone. Dad talked to the staff and made
sure I could stay until they came. Then Trevor called. He
would come and get me. Every time it changed I told the
Nurses. They freaked out. Trevor was on the phone. The one
Nurse starting yelling. First you have one ride. Then another.
Three different plans. I told her Trevor was on the phone. He
would pick me up. He heard all of that. All of the patients
were about to riot. I did spend the whole time helping them. I
also told them the Nurses were here to help. They broke
their promise to my Dad. I wasforced to go into a Taxi and go
on a greyhound or get arrested. My Dad called and one of
the patients told him I was treated badly. They also sent a 66
year old senior home alone too. Same with my roommate.
That is not the worst. Something I can’t believe happened
there. They have a hidden room where they send the angry
people. It is a small filthy room. They just have a mattress in
the corner. They have to pee in the corner. They don’t get
food the entire time they are there. I met a lot of people that
were forced in there. They don’t even a place to pee there. I
am filing a human rights violation on that hospital. My
roommate was put in there too. Forcible confinement. When I
was there it was hard to believe. I heard it from five people
that were put in there. I promised them I would get these evil
people. I was not angry when that confrontation happened.

Fight

It is good to start gaining weight. It made such a difference. I only
did that for five days. It is so noticeable. I recommend ensure to
anyone. It really works fast. I talked to my counselor here. She gave
me some good advice that I will share. If we don’t use ourselves in
doing what we can do. We will lose everything earlier. She does not
want to see me in a home so soon. Clean something. Every day I
have to take out Lucky. I also have to do dishes. That is all Trevor
wants from me. I was happy when I got home. I have not seen my
Lucky in so long. He misses me so much. I am the person that
spends all day with him. I missed him so much. The Zyprexa did not
put me asleep either. When I was on Serquil I was up all night. This
is a continuing trend. I thought I would get sleep last night. I was up
really late. I am kind of a bit sacred for home support. I know we
need it bad. I have to realize there is no point in worrying or getting
scared. Just accept it. It is going to happen. That is HD. We need to
learn how to move on. Don’t let HD stop you in its tracks. Fight it with
everything you have. We have to live and love our lives. We can’t if
HD takes over every part of our beings. We need to be strong. We
are the ones that can take control. We are the ones that can defeat
HD. You can’t take way our joy for our life. We won’t let you in. We
will fight you out. Leave us alone. Let us be at ease, for once. Take
our life back. Take our future back. Take our hope back. Don’t let
HD taint them. HD tries and puts up a good fight. We are stronger. We just have to believe ha we can fight you.

Home Care

I am so, so sick today. This has been the worst HD day I have
had in a while. I am so sick. I have really bad chorea. I almost
feel a couple of times. I had a hard time dressing today too. I
am going to have a home support. I have an assesment this
week. I am slowly getting sick enough to need one. I feel the
good days are over. It does not matter. I have to accept the
change; it was bound to happen anyway. My Dad will pay for
that. I dropped down to 103 pounds. I lost 45 pounds in the
last year. Not good. When I went to the hospital. They gave
me ensure 3 times a day. It worked. When I got home Trevor
could tell. I don’t look deathly skinny. Today is Jenny’s
funeral. May she rest in peace, forever in our memory? I will
never forget the impact she had on my life. I can never ever
forget her. We will always love you Jenny. I took my Zyprexa
last night. I hope it works better. I am so sedated on it. I will
tought it out to have normalcy. I updated My Story and HD
Info Page.Trevor is going to study for his Certs. That is the
test that will give him his degree, Network Analyst.

Cranbrook Psyche Ward

am sorry I was not able to blog for days. Not only have we had
Jenny to deal with. I emailed every media outlet and they are
leaving us alone. People are walking up to Scotto and emailing my
brother and saying sorry. He has no idea who they are. He has
watched the reports too. He said Jenny died quickly and was
painless. Every 15 minutes on the radio. Poor Scotto. He is 20. He
loses someone every year. He is torn up about going to Rimbey for
another funeral. Last one was poor Dylan Stoner. He was Scotto’s
best friend. We had the same friends. I had known him since grade
2. He got into a horrible drunk driving accident. He was she same
age. He has also lost 5 of his school friends. After I heard, I stayed
up all night trying to get rid of the reporters. I was sent to the
Cranbrook Psyche Ward. My Seriqouil was giving me horrendous
hallucinations. It was also making me angry. Dr. Trew said that the
anger was a side effect of the serqoiul. They upped it. It would work
for a bit and then it would get worse. They put me back on Zyrpexa.
They upped it. I got realised today. I am glad I went. I hurt for all for
these people with horrible mental illnesses. I gave them hope and
a reason to live. It hurt me to see people struggle in life. I have to
help people. It does not matter who. While working on myself too. It
is part of healing me. These people have had a hard life. Alcoholics,
drug addicts. My roommate was clean for a month. That is such
good news. She can begin her life again. When today I left
everyone had tears in their eyes. I told them to set goals and
achieve dreams. I told them their lives mean something. I also told
one of the guys there that his life meant something. Never hurt
yourself again. I met every member of his family. They would miss
him so much. They all needed help. I was blessed to be there with
such a group of very nice people. Mentally ill are people too. I don’t
think people sometimes don’t think that. I love them all. Who have
such problems they can’t help. They saw a kid in there. Were
surprised at the wisdom that can come out of 25 year old. That is
the sad part. They left the door open when I had to sleep. I was
scared and had hallucinations. The sad thing is I can’t go to Jenny’s
funeral. I talked to my Aunt and she said Jenny would want me to
get better. I am working on a memorial page. I want to get my
cousin on here. You can all know how amazing she was. I am so
glad to have known her. I also wrote a poem for her. I am going to
get home support now. It is what my family wants. It won’t stop me
from coming here and working on saving people from the cold
reality we face. Everyone get in the warm world that we live in. It will
always be this way. We have to know to come here. I would never
take that away. I swear I will be on my “Death Bed” and still
blogging. It would never be like that. We are all going to live. I just
wish I could say the same for our Jenny. I was in the hospital and I
told people where I was from. They told me do you know about that
bus crash. There was one woman who went through almost the
same circumstances. Her poor son in law was murdered in
Edmonton. It is a cold case. She told about how hard it is for people to deal with that. It is so having to hear it all over the place.

Jenny

I received terrible, terrible news today. My 18 year old cousin
Jenny died today. She was involved in a school bus accident
in Rimbey. My home town. A gravel truck hit the school bus.
There were 14 kids on there. My cousin and another 2 other
kids were killed. That is the same bus all of my family rode
every school day. This kills me. She was 2 months away from
graduating. She was sadly an only child. That is what kills
me. My poor Aunt Donna and my Uncle Jim. The worst part of
this is the media won’t leave my family alone. There are
getting tons of calls from horrible mean reporters, wanting
the story. My Dad got tons too. Every single member of my
family. My Uncle Jim and Donna had to leave there own house
because of all the reporters. This is hard. It happened this
morning on the way to school. I just wish everyone would
leave my family alone and let them grieve. The funeral is on
Tuesday. I am going back home, on Saturday. This is so sad. I
want all of them to leave my family alone and let us grieve. I
used to babysit Jenny all of the time. She was a bright spot in
our family. We will all miss her. Very, very smart sweet girl.
Had her future ahead of her. All of those poor kids did. Today I
won the mother load of awards. I feel so bad having
something really good for me and have to feel so sad. What
is worse I was flipping through the channels and I saw the
bus she was on. It was ripped in half. I wish I am the only one
in my family that that will haunt.I am going to dedicate the
highest awards I won in my cousin’s memory. This is your
award now Jenny. All yours. I won the talking Hands
Compassionate Award in your honor. It is the oldest kind of
its award. It has been around since 1986. They had me go
through 3 different processes; the first was if they liked my
site. The next one was a laudation for someone else who
knew me. Trevor helped me. The next was 3 glowing
laudations from 3 people I did not know. It took three
months. I actually never thought would win this. There is no
higher award in the world. This is what I leave you Jenny. Also
all of the other victims on that bus. My heart bleeds for them. This is what they have to say about me.

---

What a mind-blowing illness Huntington's Disease is and to
visit this web site leaves one grateful for the minor ills one
may have in comparison to Huntington's.

---

A brilliant resource provided by the author who has ''been
there and done that" thus providing validity to the content
provided. For those among us who live with Huntington's
Disease this site is a must read where one will find
information on myths and misconceptions, the importance
of genetic testing, treatment methods, hope for the future
and more. And even if one lacks interest in the items
mentioned, any person just diagnosed will find that they are
not alone - that there are people who do understand.
This user friendly web site provides a fantastic resource for
Educators, Students and families alike enabling all who visit
to gain deeper insights into this terrible illness.
Forever in Jenny’s memory. This is my tribute to you. The
biggest award for the most wonderful teenage ever. Who
lost her life way too soon. We will never forget your short contribution to our family.

Another new possible cure

This a promising new study. What do I have to say. This is our year.
This is our life. These are our possible cures. Don't ever stop
believing. It will come. We are waiting.

http://www.umassmed.edu/bmp/faculty/zamore.cfm?start=0&&

Back Here

I am back here. The other server caused problems with my main
page. It got deleted. They wanted me to pay an obscene amount of
money to get it back. I should have never left here. I had to make
this main page over. Angel fire is good. I love you again angel fire.
Yesterday when I saw my index was gone. I was so upset. All of that
hard work gone. I was in tears. Trevor told me I could make a better
one. I had a bad HD day. I could not dress. Bumping into everything.
I have bruises all over. I fell out of my chair last night. I spill
everything again. I was very confused. I had hallucinated too. I
always hear things outside of my apartment. Go out and check and
there is nobody there. Yesterday I saw someone out there. It was
scary blurry person. We got a hold of my Dr. Trew from Calgary.
Because of anger, they are added 50 extra of my Seriquil. That
would be 250. If it does not work, there are other meds I can try.I
have to fight HD the best I can. With a smile on my face. With hope.
We need to survive. Just survive HD. We will get to a point where we
can be cured. We will have our life back into our hands. That life
you never thought you would get back. We will have everything
back. Just keep on living. Keep on fighting. It is worth it to just
smile. Just love ourselves. You deserve a life worth living. Just make
it yourself. Make something you can be proud of. Something to
keep us going. Every second is a struggle to fight HD. It is always worth it in the end

Home Care

I am slowly figuring out things on here. Trevor is burnt and will have
to go to respite retreats. I am going to miss him so much. He will
take off for a week. We have never spent a day apart. This will be
hard. They want me to get some home support here. I am not ready. I
am petrified. I don’t feel I am that sick. I am still having healthy
days. This has been a hard day for me. A lot of changes happening
in one day. When Trevor goes I will go with his Mom. It is hard to
find the hope on days like these. This is where it counts the most.
When we have to make changes rapidly. This illness takes us. It
can never take our souls. Our fight. Our strength. It can never take
that, you don’t give in. Don’t let it claim that fire. That fire is all that
saves us. We need the fire to fight. We need to accept these
changes. Move on with a positive leaning. I will be sick and be
cured. A long with all of you. We need to believe a hundred percent.
I am getting sicker. We are all getting there too. We are the ones
that can stop us from worrying about it. We have HD. WE are the
ones that can live our lives. We have control. Take it back. Take back your power.