HD Australia

Hi everyone, I hope you are all well.  
I am currently going through the process of being tested (although they are yet to take my blood), and was talking to Michelle the other day and have decided to share my testing journal with you.  So here goes, here's my first journal entry which was written on the day of my first appointment 16 February 2009.


I am so frustrated right now.  I went for my appointment for Genetic Testing yesterday.  When I made the appointment I disscused with them the process for testing here in Canberra.  I was told that on my first appointment I would meet with the councillor to discuss why I wanted to be tested, my knowledge of HD and the family history as well as having blood taken.  I was told I would get my result when I saw the geneticist on 7 May 2009.  Not so! I just found out I wont have the blood taken until at least 7 May 2009 and it will only be taken then if the geneticist feels I am ready.  I am so very very angry and frustrated.  It is my choice to know, my right, not that of some Doctor I have never met and who doesn't know me at all.  If they had told me from the start what the process was I am sure I wouldn't be this angry.  I had myself prepared (as well as one can be) for the process and was looking forward to getting the results on 7 May so I can finally start making some decisions (re: children etc). Now I have no idea when I will be getting tested as the decision rests with a stranger.  I feel this is so very unfair.  The councillor has promised that I will be offered an earlier appointment if there is a cancellation but the Dr only comes to Canberra once a month so there isn't much chance of getting in earlier.  I know testing is a complicated process but shouldn't it be my choice as to when I get tested not someone I have just met?  This makes no sense to me.
I didn't mean to get so emotional at the appointment, the genetic councillor Linda was wonderful and it certainly wasn't her fault that it was explained incorrectly.  We both ended up in tears as she felt awful that there had been a miscommunication with something so important and I was just so very angry I couldn't help but cry.  
I put it behind me that afternoon and decided I wasn't going to think about it until closer to the date, that worked for all of about two days when I found myself so angry I would just burst into tears at the drop of a hat. Thank goodness that didn't last long and I am back to normal, I guess the anger was just part of the process........

Hi Carlie. Thanks for deciding to share your testing journal with us. It's one of the most difficult times of your life to navigate and if you feel like it helps you to write, then I know that we get a lot of help out of it too. I hope if its right for you, that you continue to let us know how you go. It is a really tough time for you right now and we are thinking of you.

Hi Tony, thank you for your kind words. I find it very theraputic to write so for me this is a coping mechanism. It's also a way to get other people's perspectives on it as I think we can all learn a lot from each other. Looking forward to talking with you more.
Love Carls xo

Hi Carlie,

I'm thinking of you, too.


Sal

Hi everyone,  

I haven't posted another journal entry until today as I have come to terms with the process and time frame and have felt quite at peace about it all.  I have the first Psychologist meeting tomorrow afternoon which will go for an hour and a half, which I thought was quite long but then again they haven't been able to tell me what this appointment will entail so I am a little nervous.  I have never really liked the idea of someone poking around my psyche but I guess they sometimes need to, I just hope I don't scare her too much   

I am still feeling at peace about the whole thing and trying not to let it worry me too much.  I still have the random emotional moment such as holding a friends new baby the other day, I had to hand her back and walk away as I started to cry, why I am letting this worry me I don't know, I haven't been given my fate yet so I shouldn't be so negative!  I guess I feel like my clock is ticking a little faster than most.

But all in all things have really settled down and I am looking forward to getting this appointment tomorrow over and done with, it just means I am that little bit closer to knowing.

I hope your all well.
Love Carls xoxo

Hi Carls - it was great chatting to you. I see you timed out - I'm not sure how the whole chat thing works but I'm happy that we "talked".

Of course you're bound to get emotional with things like holding babies - HD has a major impact on your life whether you test positive or not - and until you get your results, you're stuck in limbo - kind of frozen in time, because you don't have the information to be able to make decisions and move forward.

I'm thinking of you - keep in touch, and let us know how the meeting with the psychologist goes - take pen and paper, and also write down any questions you may have - once you get into the consultation, if you're like me, you're so nervous, everything flies out of your head, and after you can't remember exactly what was said.
Take care,
love,
sonnie

Hi Sonnie,

Sorry I timed out!! The work computer shut the internet down for a couple of minutes - weird!! It was great chatting to you though! It's the first time I had used it too and was really impressed.

I guess you are right about the living in limbo I do feel a little that way. Thank you for the advice on pen and paper, I always forget to and kick myself afterwards so again thank you. I had forgotten to even think of it already. I guess I am a little nervous about it, and I am like you I always forget half of it before I am even out the door.

Take care
Talk soon
Love Carls xo

Hey Carlie,
I hope the appointment went well! I hope you scared the socks of her with your psyche ...haha
Seriously though I hope the appointment was useful and your doing ok.
Talk more soon
Love Michelle xx

Hi everyone,

Sorry I haven't posted this sooner, it's the latest update in my journal from when I had the psychologist appointment.

LOL Michelle - I didn't scare her so much as my fiancé (Danny) with my nutty behaviour .

It had been a really hectic day with a few issues going on at the nursing home so by the time I got to the appointment I was really wound up - not ideal when someone is poking around in your head and watching your every move.  I sat there answering questions at 100 miles an hour with my foot twiching nervously the whole time (Danny kept glaring at my foot to try and make me stop!).  

The psychologist was lovely and the appointment only went for about 40 minutes instead of the 1 1/2 hours I was told it would take and she told me at the end that she had no problems with me being tested, and in fact thought it would be detremental to hold off on the testing process as I couldn't make decisions about children etc without knowing.  

It was such a relief and quite a surprise considering I was acting a little nuttier than usual and was talking so quickly and twitching my foot.

I think next time I get so wound up before an important appointment I should take a calmative of some sort.  Danny was suprised she approved me for testing with the way I was that day as it was so far off how I normally act.........He had said so many times on the way to the appointment "You really need to calm down a bit or she is going to think you are nuts!" and he was right, I was just lucky she took it as me having a bad day.

I am feeling more at ease knowing she will suggest they proceed with testing, now I just have to hope the geneticist feels the same and doesn't think I'm a head case.  I am taking that day off work and will be turning my phone off that morning and letting Danny deal with any calls that day about Dad just so I don't get more wound up than I will already be.  Hopefully I will be able to have a nice calm conversation with her without twitching my foot!!

At least now I can look back and laugh at myself acting so irrationally and hopefully am a little more prepared for the next step.

All in all I am looking forward to the appointment on May 7 as it brings me a little closer to finding the answer.

I hope you are all keeping well.

Thank you to everyone for all your words of encouragment and support it means the world to me.

Big hugs
Love Carls xoxo

Carlie, I'm glad you got through the visit and are moving through the process. Best wishes for your May appointment.

Sal

Carlie i know your experience was not funny at all...but it did make me smile...i thought it would make for a great scene in a movie

Im so glad it all went ok...and you passed the test! Yay!
Danny sounds very supportive...which is great.

Goodluck on the 7th May!
Will be thinking of you! x

Lilcarls you could try sitting on your foot -  although I guess you will be limping out which is just as bad.   

Good luck for the May appt, didn't realise how close that actually is. I can't understand why they would say no to testing for someone who wants it done. People have the right to know so why would they refuse to do it?

Debbie

Michelle, I can look back and laugh heartily at it now, I don't know how on earth she passed me for testing considering how I was behaiving, Danny said if he had been the psychologist he would have pulled out the white coat and wheeled me off!!

Deb, I think next time I will have no option but to sit on my feet, maybe the hands too in case they start!!
From what I have been told about the process they will make you hold off on testing if they think it could be detremental to your health (you are not in a stable enough frame of mind to cope with the answer). I think what I have found most upsetting is the staff at the genetic unit at the hospital keep calling to talk to me about the process and they all keep telling me different things, but one thing they all keep pointing out in every phone call is it is up to the Geneticist (and not me) when I will be tested. I think telling me once would have been more than sufficient, it seems a very negative way of going about things.....

Big hugs
Love Carls xoxo

Hi Carls - good luck with your geneticist appointment on the 7th this week. When you get a chance, please let us know how it went. I'll be thinking of you - don't be nervous.
Love,
sonnie

Hi everyone, I hope your all well. I just thought I would check in and let you know all went well at the appointment today, I was surprisingly calm and not nervous as I have been for each of the other appointments. The Geneticist Dr Anne Turner was just so lovely which of course made it easier. The bloods have been sent off and now we wait for 8 weeks or a little longer depending on when the results arrive and when Dr Turner is in Canberra. I feel much better knowing that I am a little closer to knowing and much more at ease about the whole process now that the blood has been sent off.
Talk soon
Love Carls xoxo