going public on terb

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amber-jade

Hunting..what ??
Apr 21, 2006
2,911
1
0
Very Retired
over the past few years i have met a lot of amazing people.and made some close friends
those of you who know me understand why some of the ones who do not know me as well
have suggest...Amber is stoned or accused of just being ''wierd'' etc.

i have been asked why i am not longer in the business many times over these last few months.

i did not make this video , but it has some information in it that might help to explain a few things

it says it all, i feel close to the words and the people in it....i would like to share it here now

i will continue being a member of terb as it feels like family to me..
some of you are way to funny NOT to stick around for..

 
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randygirl

New member
Apr 7, 2010
656
0
0
erin.therouge.ca
Huntington's disease is unfortunately an obscure disease which not many people are educated about. Often, as you stated in your OP, a person is misjudged, and perceived as being drunk or on drugs when in fact, they are not. A diagnosis can be devastating, and changes the entire course of a persons life. I empathize with you, and I hope that you are coping well and that you have support in your life.

My best friend was tested and received his diagnosis just two months ago, although he has yet to experience any symptoms. Huntington's has affected my life, as well. It is my hope that research soon bears fruit with better treatment options, but I fear that it's a long way off.

Kudos to you for coming out and sharing with everyone. You will gain valuable support and help educate those who don't know about Huntington's, pretty much a win-win for everybody.

I can't imagine what you are going through. I wish you the best life possible, even in the face of this diagnosis. If I could, I would totally give you a hug right now. (~Hugs)
 
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Brill

Well-known member
Jun 29, 2008
8,671
1,194
113
Toronto
I'm glad you're free to be open with this, Amber Jade.
You're a cool chick with a wicked sense of humour, it's nice you have a place to share this.
 
A

amber-jade

Hunting..what ??
Apr 21, 2006
2,911
1
0
Very Retired
randygirl said:
Huntington's disease is unfortunately an obscure disease which not many people are educated about. Often, as you stated in your OP, a person is misjudged, and perceived as being drunk or on drugs when in fact, they are not. A diagnosis can be devastating, and changes the entire course of a persons life. I empathize with you, and I hope that you are coping well and that you have support in your life.

My best friend was tested and received his diagnosis just two months ago, although he has yet to experience any symptoms. Huntington's has affected my life, as well. It is my hope that research soon bears fruit with better treatment options, but I fear that it's a long way off.

Kudos to you for coming out and sharing with everyone. You will gain valuable support and help educate those who don't know about Huntington's, pretty much a win-win for everybody.

I can't imagine what you are going through. I wish you the best life possible, even in the face of this diagnosis. If I could, I would totally give you a hug right now. (~Hugs)
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that was nice thankyou xoxoxo

on the rating scale of 0 - 5
0 being no symtoms i am at mostly 3's

i tried to hide it and continue at an attempt to be ''normal''
that time has come and gone for me ..

*hug* :)
 
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Cycleguy007

Banned
Nov 20, 2008
13,235
5
0
On the bike trails in Cambridge- or in the lounge
www.livestrong.com
Amber- you know you have always been one of my fav Lady-Terbs! Like Brill just said, you're one extremely cool chic, with an awesome sense of humour and a good head on your shoulders. I have had lots of fun with you in the lounge and hope that continues for a long time.

I don't know much about this disease, so I will have to educate myself as to its ups and downs, suffice to say, I'm sure you will face its challenges head on.
 
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amber-jade

Hunting..what ??
Apr 21, 2006
2,911
1
0
Very Retired
mayfairman said:
i've never met you, but i want express my support in your fight against Huntington's .Hope you beat it!
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thankyou for this post..

huntingtons has no cure...my father 's side of the family has the gene...

truth be known....if it follows the family trend...i might have a few years...

work is being done for a cure but i will be to late for me by the time it is ready.
 
R

randygirl

New member
Apr 7, 2010
656
0
0
erin.therouge.ca
mayfairman said:
i've never met you, but i want express my support in your fight against Huntington's .Hope you beat it!
Click to expand...
Huntington's disease is an incurable genetic disorder, it affects sufferers to different degrees. There is really no beating it...

Unfortunately, once it is progressive, the only possibility is to live your life the absolute best you can, while you can. Literally, make the most out of every second of health (or near health) that God has granted you. But, I'm sure Amber already knows that.

Amber, do you mind telling us how you ARE coping with it? What do you do day to day, how do you manage? What do you tell yourself? How do you stay strong? What do you you do if you are feeling down?

(Of course, if you don't want to share, that's okay, too. I just thought you might have some really valuable views on coping, some that we might be able to either relate to or use in our own lives.)
 
A

amber-jade

Hunting..what ??
Apr 21, 2006
2,911
1
0
Very Retired
randygirl said:
Huntington's disease is an incurable genetic disorder, it affects sufferers to different degrees. There is really no beating it...

Unfortunately, once it is progressive, the only possibility is to live your life the absolute best you can, while you can. Literally, make the most out of every second of health (or near health) that God has granted you. But, I'm sure Amber already knows that.

Amber, do you mind telling us how you ARE coping with it? What do you do day to day, how do you manage? What do you tell yourself? How do you stay strong? What do you you do if you are feeling down?

(Of course, if you don't want to share, that's okay, too. I just thought you might have some really valuable views on coping, some that we might be able to either relate to or use in our own lives.)
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you will let me know when you are in niagara ..:) i would love to meet you..

anybody who knows me knows i am very bubbly, open, laughing and smiling.

day to day varies for me
,i have the love and support of an amazing man whom i will love literally to death. and i know will be by my side for this.

truth....walking down the road too a store is just a memory for me now, it is becoming more difficult as my balance is right out the window.
justin and i carry medical documents with us when we go out.
i get told i am drunk and refused enterance into the casino ( until we show the docs of course), a cops has pulled up next to us as we walk down the road to ask is i was to drunk to be walking

i bump into things often, drop thing, i know i am doing it ,i just can't control it.
i think i am (for example) taking a drink from a glass but my hand might drop the glass, or have a involuntary movement ( aka: chorea ) and it spills all over me

it can be annoying to say the least
 
reaper29

reaper29

Don`t fear the Reaper
Dec 14, 2002
1,024
384
83
the dark side
Amber, I have never met you but I also wanted to offer my support along with the rest of this community. Maybe one day, there will be a cure for this disease. Take care.
 
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Omnius

New member
Sep 6, 2008
105
0
0
Thanks for letting us know. No, we have never met, but I still wish you my very best. I dated a long time ago someone who started showing symptoms of Huntington's. It was hard at first, but she also learned to take life by the horns and live every day to its fullest. She was an inspiration, and I still celebrate her life by how I live mine. Give your loved ones the same gift. Love them. Share with them. Make them see that one can live a lifetime in every single day. I wish I could just get up and give you a hug, but that might just look creepy coming from a complete stranger ;) Huggs and kisssses.
 
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Aardvark154

New member
Jan 19, 2006
53,710
3
0
Amber, although we have never met I'm very sorry to learn of this. Keep your spirit up, and thank you for being so very open and honest about this! Although personally I'm familiar with Huntington's Disease, you are right that the general public is not well informed.

Again, I'm very impressed with how brave you are in going public with this.
 
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amber-jade

Hunting..what ??
Apr 21, 2006
2,911
1
0
Very Retired
Lasttime said:
OMG Amber . . . missed the reference that you "might have a few years" mmmmmm waaaaay to short with someone with your love of . .. and yes lust for . . life. Not to rush the inevitable but how would you want us to remember you??
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with a smile and a laugh...don't be sad...life is WAY TO SHORT....:)
 
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randygirl

New member
Apr 7, 2010
656
0
0
erin.therouge.ca
amber-jade said:
you will let me know when you are in niagara .. i would love to meet you..
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You bet I'll take that offer! I'll be making a little trippy to Niagara and Port Colburne (sp?) this summer. :) If you have an hour to spare for me, I'll buy the beverages.

amber-jade said:
anybody who knows me knows i am very bubbly, open, laughing and smiling.
Click to expand...
This is absolutely one of the best ways to cope. Smiling and laughter is good medicine, no doubt about that. A positive disposition and outlook can make your quality of life exponentially better. As can the support of a loving spouse.

Glad to hear all of that.
 
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Brianna1

Member
Dec 8, 2006
389
7
18
Whitby/Toronto
Amber wow what can I say except to fight the cause baby!!!!! Being a cancer survivor and fighting for a couple of other causes that are very important to me, I believe we are put here for a reason and that is to fight what what we can. I have not had the pleasure of meeting you (including Lastime's many attempts to have us both at the same time hahaha) I wish you the best and Fight Fight Fight baby. As one person, I can make a difference and as many WE can find a cure!!!! Good luck Honey!!
 
A

amber-jade

Hunting..what ??
Apr 21, 2006
2,911
1
0
Very Retired
Brianna1 said:
Amber wow what can I say except to fight the cause baby!!!!! Being a cancer survivor and fighting for a couple of other causes that are very important to me, I believe we are put here for a reason and that is to fight what what we can. I have not had the pleasure of meeting you (including Lastime's many attempts to have us both at the same time hahaha) I wish you the best and Fight Fight Fight baby. As one person, I can make a difference and as many WE can find a cure!!!! Good luck Honey!!
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he did try hard for that didn't he? lol

a mouse was just cured of Huntingtons but by the time it will be available to public testing i will be to late for me.
it will make me happy knowing the cure will be out there for others...after i am gone...

you know the funny thing?
one of the symptoms is a higher than normal sex drive....

IMAGINE THAT lol
 
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