Heather's Huntington’s Disease Page
heatherdugdale's Angelfire blog
- Last build:
- Sat, 8 Mar 2008 15:27:15 -0500
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RSS FEED IDEMS: Heather's Huntington’s Disease Page
- 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.
Sat, 8 Mar 2008 15:27:15 -0500 - 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.
Fri, 7 Mar 2008 11:17:31 -0500 - 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. I
had 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
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.
Thu, 6 Mar 2008 23:46:57 -0500 - HD Surving
At night my HD symptoms get worse. Yesterday I was really tired and it
was hard to function. By 5, I was dancing all over the place. It got worse.
This morning as I am writing this, my hands are struggling for control.
Last night something scary happened though. I was sitting in my
computer chair, working on here, I started twitching all over. Dancing too.
I could not stop. My arms, legs, I could not sit in the chair in one spot. It
was that bad. It lasted 15 minutes. I thought it would never end. Trevor
was there with me at that time. It was the same thing that I have seen
happen to my brother Gary. He knows that too. I had no control and
movements were so different. When that was happening I was having a
hard time talking to Trevor. He told me not to worry. He is so scared of
losing me. I keep telling I am going to live. We all will. I am waiting to be a
part of the top 50 award winning sites. Let’s see if I could join that. Even
though I am getting sicker I am getting happier. I love my life. Great
Husband. Great Lucky. Website is changing lives. That is had put it up for,
the hopeful voice you have every morning. The main thing that makes me
happy with my page. I am saving lives with a disease that has the highest
suicide rate out of any illness. With the HD scene there are people that
know that, and give no hope. That's what drove me to make this.
Volunteering at the Distress Center in Calgary, makes you appreciate
saving lives. Take joy in your life. We should not let HD to take that away.
Live, just love it. One life is all we get. We are planning to show people
that an HD marriage can work. When we were engaged we knew the odds
of HD divorces. I picked on that was a caregiver type. Take joy in the little
things in your lives to. We don’t ever need to be unhappy. Even though
with HD we have to fight for happiness and hope. We can get there. I
always wanted to get married young. I felt I needed to enjoy it. I needed
someone to look after me when I got sick. Who knew that months into our
engagement I started with the mental symptoms? You can’t regret
anything. I am happy to have HD. It is a blessing in disguise. It brings us
closer. It made me understand the sick patients I looked after; I would
become one of them. Learning to love HD is a hard process. Once you are
there the light takes over. The hope takes over. I still believe this is our
year. Take it back for HD. We will find a way that will eventually stop you.
We are already so close. This life is ours to live, with HD. Let’s enjoy it.
Let’s love our life. We need to live it and love it. It is all we have. We have
to have a great future. We are the ones that make that though. Change it.
Never let HD take over your spirit. Fight it.
Thu, 6 Mar 2008 13:09:11 -0500 - 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 aboutHuntington'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, theyall 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.
Wed, 5 Mar 2008 14:26:01 -0500 - 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 truck on
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.
Wed, 5 Mar 2008 13:23:00 -0500 - Lagoon Award
Won #30 today! 3 international awards now! In 8 months of my site being
up! Thank everyone for honoring my site. This is my life. Every day I work
on making something easy on the eyes and inspiring. It is great since this
might be the last thing I do. I would be on my hospital bed and blogging!
Trevor and I have been joking about this. Getting my wheelchair spiffy,
pink, raised, spinners, and putting a laptop on it. Now that am over my flu
the webpage and graphics lessons come. He has lots of work to do my
computer now. We just got it back and it is not reading my disk drives.
Maybe back to laptop again. You have to laughat everything to get over
the pain. I still will always believe first and foremost we will not die.
Since I found I had beginning stages that is when I had to teach someone
else everything I do. Trevor agreed. We will get our cure. We will get
there. We are so close. All of the hurt. All of the ill will. Speaking of that I
had the worst HD day I could yesterday. I did not get much sleep
yesterday. I never had been more confused in my life. Everything
confused me. I was walking with my best friend Elissya here. Every day we
go out and walk Lucky together, his Godmother. I was not paying attention
and out of it, I almost got hit. She pulled me away. I could not even see the
vehicle. Then we went out with Trevor’s Mom for dinner. That’s where I
was looking at the menu, closed it, and had no idea if I looked at it. Get
every bit of sleep that we can. I also had severe brain fog. It was a bad
day. Everyone that has this has the same as I do. I have to accept I had a
bad day. I am seeing firsthand what sleep does and does not. I am better
today. A good sleep. It is that imperative for our everyday survival. Gary
has been put on the same meds as I am. It is going to get worse for him
when he finds out he can’t get his license back. I know Scott drives down
there and takes him where he needs be. I want badly to see him happier. I
call him every two days and give him hope. Tell them whenever I find
breakthroughs. Life is hard and with HD in the mix. I would never wish to
not to be born. I love my life. We have to. This is the only one we get. Live
it, enjoy it. We just have to cope with all of the pain we get. Just believe in
a cure. Believe a good quality life. Believe in a future. Just believe
everything will improve. It will get better and better instead of worse.
Don’t ever lose faith too. The cure will take time, but it will come. This is
still our year. Take this year back away for HD. Every day new hope.
Tue, 4 Mar 2008 17:22:22 -0500 - 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.
Mon, 3 Mar 2008 12:05:09 -0500 - 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.
Sun, 2 Mar 2008 20:19:55 -0500 - 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.
Sat, 1 Mar 2008 19:21:56 -0500
