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I had a thought the other night.
It was more than a thought, I acted stupid. Lowered my standards, etc.
I hung out with this looser, (a serious tool-who somewhat resents George Clooney... that's it) He called, asked what I was doing, I told him. (hanging with friends) I met him once and he was totally not- who I would ever look for if I was looking. We were friends only (past month or two)...

Just the other day-- I emailed Brent (Bob Vila) asking him why guys were dinks. Because of this--Dink!!!
He sent me messages and stuff basically saying "I got lad twice/two chicks this weekend" (mmm...no...you contacted me and said otherwise but must have forgot geek!) Brent, agreed he was off. I thought I was paranoid. We met for only a few min-never ever thought I would see him again-never thought of him romantically.

So Mr. Man shows up, My very few friends that know my situation...(Lu, Carrie) and knew alllll about him... (Thought he was hot THEN told him the story) So when he called we almost joked, hope he shows up we can tell him to piss off. He showed up and was nice, and I had been just...so needy obviously lately. (Nutty? Literally?) I had spent time with the girls getting the hair/makeup done (they own a salon)...shopped...stole Carries crap...etc. I felt great. Mr. Man liked it, and nothing happened but I allowed him to just slime ball all over me. I danced like a whore... I let him whisper things to me... ewww. (now).

If this was someone half-likeable... ok. Slow, but OK. Nothing serious I plan...ever.
But is this it?? Forever??
Be a whore? Settle?
Stay miserable (too late cut the cords...but if I had not) in current situation??
This is awful...I am not talking about sex....or monogomas relationships...but-- who will understand me?

I admit too much to "Bob Vila"/Brent... When we first spoke I thought (and said) "YES!!" (HOT!) and after realized I just adore him. Too much to ever subject him to whatever is coming (who knows?). I had a urge to take care of him, he is symptomatic now. (I am probably also) -- but in a non sexual way to respect him. (Although, even if he was much sicker- and I was not thinking about him as my friend... I would still do him/no problem) I have never cared about someone I barely know. I think it's just the understanding, he gets it. He tells me when I am a dork, and makes me laugh. I think I creeped him out at first- but I am too honest.  Apparently, too horny too. No worries, 200% respect....Not even selfish-- so not me. 

My grasping him (and Brett) as a friend is a HD instinct thing...but these new thoughts after letting someone uses me.... ugh.....

I always thought--even if in a messed up way, I would have a soul mate. Not thinking it to be possible aches.
Aches bad.

I am doing well, :) I just need to avoid this thought for a bit.

Quick question.

I thought I saw somewhere that by taking vitamins and staying in good physical condition, you may be able to hold off the onset of the disease by a few years.

Could anyone shed some light on this topic?
I still have not been tested, but I would like to get a head start now.
Regardless if I don't have it, it's always nice to be healthy :]

I guess my questions are:
-Is that legit?
-If so, what kind of vitamins would be good to take?

Thank you! 

 

Jan. 19th, 2009

9 and 17 are now officialy my lucky numbers.

I have just got my presymptomatic HD test results and feel soo lucky to be able say it was negative.

My CAG repeates came out as 9 and 17 :

<27 Normal Unaffected
27–35 Intermediate Unaffected
36–39 Reduced Penetrance +/- Affected
>39 Full Penetrance Affected

all the affected members of my family have a very high CAG count so my results coming in soo low was a real shock.

I am of course happy but at the same time am very worried about how this will affect my brother and if he ever does get tested how guilty i could potentialy feel for being ok.

I have put my name down to assist in any clinical trials that require people that have had the negative test and will be here on this forum if any one ever needs some one to listen.

best wishes and luck to you all,
Chris
Hi all,

its been a while since I posted on here but have been going through alot of stuff and will be going through even more in the coming few weeks so kinda need to vent.

Tommorrow I will be going to the hospital to have a blood test for the presymptomatic testing of HD.

As I have stated before the main reason I was getting tested was because my fiancée and I planned to move to canada and it would be easier to get a visa with the test results. She had said that no matter what the results she would stay with me... well that kinda doesn't matter anymore as she decided she didn't want to be with me regardless of the results.

That was three weeks ago and I was soo close to cancelling my appointment but decided against it. I have been preparing myself for getting the results for almost a year now and I still do hope to move to Canada at somepoint in the future so I think I should still go through the testing. Its going to be hard dealing with the results either way without having Gemma by my side but I feel I owe it to my own future to go ahead with it.

Gemma and I are still sharing a 2 bedroom flat and we are still friends. She will be coming with me for the blood letting tomorrow and then the results on the 19th.

I have taken the week before and after the results off work and will be spending the week before with my family and friends from back home in Hertfordshire, I can still then come back and tell them that actually I dont want the results... but I dont think I will do that.

hope you are all doing well,
Chris


National Hug Your Caregiver Day Initiative
November 21st

Caregivers are the backbone that supports our society. They come in many shapes, sizes, and focus in many different areas. Everybody knows caregivers. They can be parents, spouses, family, friends, healthcare providers, massage therapists, chiropractors, nanny's, babysitters, pet sitters, or anybody else who has taken care of another living being.

Caregivers are also some of the most ignored and taken for granted people in our society. These people dedicate part of their lives, if not their whole lives, to caring for others. And yet, they are often touch deprived and feel under/un-appreciated.

Started in 2008, the National Hug Your Caregiver Day Initiative is trying to raise awareness about caregiver appreciation. We are helping people learn to show their appreciation for the caregivers in their lives.

Join our yahoo group at: http://groups.yahoo.com/group/hug_your_caregiver_day/

Use this blog to share your stories about caregiving, or to share your stories about a caregiver who is special to you. 


The website is being created and will be going live by January 2009. 


"Smile! You're getting hugged!"
Today, my uncle Terry died. He too suffered from Huntington's disease and he was the last of my dad's brothers to be alive. He made it to 50 years old and stayed positive every step of the way. Unexpectedly, he went into a coma yesterday and was on life support and doctor's claimed he was brain dead. They were able to take him off the respirator and he was breathing fine on his own, but his heart just stopped beating around midnight today.

It sucks because my uncle was the last connection I had with my dad. I have other family members on my dad's side, like aunts and cousins, but I loved my uncle like I loved my dad because they were so alike, sick and healthy. Everything it just so unreal right now, I haven't been this shocked since my dad's death.

And I have to go into work today, which is the last place I want to be. Also, have any of you heard of the drug that Huntington's had approved? I'm not sure of the name or what it does, but I read something about it in a newsletter my mom recieved.

Jun. 23rd, 2008

first session over and done with :)
was ok, i was shitting myself before hand but as soon as i was asked to go through my normal overcompensating side took over adn it went really well.

Genetic Counslor didn't seem to be expecting someone who knows the ins and outs of the disease having seen it first hand twice as well as having read all about both the known facts and the current areas of research. we ended up after the initial stuff (family history, potential problems, reason for getting tested etc etc) having an intresting talk about the CAG repeats and clinical anticipation within generations instead of individuals.

just need to get my mum to sign a disclosure form as she was my fathers next of kin so that Cardiff can get Cambridge to send over his results etc.

the only downside is that the waiting list to start the actual process is alot longer than i was hoping for. the minimum will be autumn but more likely than not November, so long as it doesnt conflict with Rancid playing Caridff Great hall ;)
then its 3 sessions within about 3 months and i will know. so latest untill i know is January 2009.... thats a lot further away than i thought.. oh well not much i can do about it i suppose

Jun. 23rd, 2008

So then today see's my first step towards finding out if i have HD.

I have my first consultation with a Genetic Counsellor in a couple of hours and although i know it is just a chat about things such as family history etc i am still sh!tting my self as symbolicly it is my first step towards knowing one way or the other.

I have always said i will only get tested when it affects me or what i want to do and it just happens to have occured sooner than i thought it would.

Me and my partner are hoping to immigrate to Canada but part of this consists of a medical check to see if you would put any exssesive strain on the medical care service. We have tried getting a straight answer from the Canadian immagration service and the English doctors who do the recommendations and no one has told us if not being tested will stop me from getting a visa however they have said that it could be too high a risk that i would become a burden on the health system.

therefore i have decided to get tested.

My girlfriend has told me that no matter what the outcome she wants to Marry me and be with me, both of us would prefer it to be healthy and in Canada ;)

so wish me luck :)

Huntingtons Disease annual charity walk

Test Results

My test results are in and I am NEGATIVE!!!!!!! WOOOOSH I think I have not breathed for the past 12 days since blood was drawn. When the Dr. told me I had to make her tell me again to make sure that I heard her right the first time. My Mom is so happy that the disease was not passed from her to me. Wow. thats all I can say.