Morning has come and I feel good :P

so yeah got 4 hours of sleep. thanks for all of your warm thoughts, hugs and support last night. it meant a lot. thanks to DV and skye for standing up for me for what liz wrote. she really didn’t mean to upset me and I wasn’t upset really. i’m used to her. she does that sort of thing a lot, and she finds things humourous and funny that maybe others wouldn’t, and really she has no filter she just speaks her mind. i’m used to it by now. it really doesn’t bother me that much. idid password th epost though because I really don’t want everyone to read that. I thought of taking it down and then I decided that I wouldn’t, because while its about me and what I said and did, its liz’s thoughts, and I didn’t want to sensor her thoughts.
this morning I am cooking chili and when I have it made I will post a pic here. I’m looking forward to cooking it. I haven’t ever tried it before on my own, well I’ll have help but you know what I mean I haven’t ever cooked a chili from scratch.
I’ll be heading home today a day early for my assessment tomorrow. I’m nervous about tomorrow but trying to stay focused and positive. mostly other insiders are a little freaked out so I am trying to soothe the kids and be the strong one.
carol anne

words hurt us

“i dont know why your being assessed”
“there is nothing wrong with you”
“your wasting peoples time and money”
“you are not sikck”
“you must love going to doctors”

all spoken by our dad. words hurt. my heart is empty and heavy. the grief is weighing heavily on my heart tonight.

i wanted mom to go to our assessment on friday. i wanted it so bad. i wanted her to go to support us.

but she said no. a firm no.

“why would i go”

“your being assessed, not me”
“I have no business being there”

“its pointless me going”

nothing about i know its hard so I’ll go to support you. it fucking hurts.



we are having a bit of an unsettled night tonight.

i think it is due to having therapy tomorrow morning and knowing there is a lot to talk about.

we are having the did experts from the pottergate centre in the UK come over this friday and do a reassessment. Its a big deal for all of us.

its been 7 years since they saw us and a lot has happened in that time. mostly positive stuff.

lots has changed for us.

I guess we are afraid in part that they’ll say we are now too stable for ongoing support on a regular basis. we do not want to lose our support system.

if anything in order for us to remain stable we need to keep it within reach.

i am however ok if they say we can go a little longer than a week without seeing dr. barry. I think I’m ready to space out those apts a little bit, even to fortnightly apts.

I guess we’ll see what happens.


so i asked mom if she’d like to come to our did reassessment which will be happening on december 8th. she said no. she said she would not be abel to cope. and i have to respect that. as hard as it is for me to hear. as hard as it is that she would rather not know too much about our did diagnosis. i think its more about her being in a room full of professionals and not knowing what to say. they’ll be discussing my treatment going forward. she did not say this but i think she might feel she would not have any input into it. so she’s not coming. i am sad about that. i really did want her to be part of it. i reached out and i offered, its all i can do. she has to take the next step and she simply isnt ready for that yet.

did reassessment

so, last night, at 7 PM i got the news…the did reassessment is provisionally booked, for december 8th.
thats not that long away! i am so nervous.
we all are. some parts are freaking out. there will be a lot of people at it, there will be us, dr. barry, eileen, mark, sarah, the new social worker, and two did experts remy acqueron and dr. paul miller.
dr. barry wants this reassessment to figure out where to go from here, what to do going forward. to figure out if she is doing the right things to care for us and if she is meeting our needs appropriately.
i get that. but still, all eyes on us….all the attention on us…i’m freaking out.

Change is hard

i’m a little stressed out right now. i guess all this change has caught up to me. so much change. and i am not good with change.

first of all i’ve started with the new cpn sarah. she has already spoken to dr. barry. last week i spoke to sarah about the hard week i’d been having. yesterday i find out she told dr. barry everything. i dont know how i feel about that. i did not realise our sessions werent confidential.

part of me feels relieved that she did speak to dr. barry. but part of me is like, i dont want her to tell her everything i say to her. i know dr. barry is my consultant. and she needs to know how I am doing. I guess I just thought some things would be confidential. After all that is how you build a relationship with someone.

I think though with the mental health team, they all write everything into your chart. So say when i see sarah or mark the OT or the social worker, they write a note in my chart for dr. barry telling her what we’ve been discussing and working on. At least that is what I think happens.

I’m a bit miffed it has to be this way. It feels like everything I say or do is scrutinized. I hate that.

Then there is the did assessment. Its happening soon. Its not an assessment for diagnosing did, thats already been done 7 years ago. But rather an assessment to see where we are going with treatment going forward.

I am nervous. What if they say I can only be treated for so many years. What then. I doubt they will but the worry is still there. These are the did experts, after all. What they say will have a major impact on how dr. barry works with me in the future.

She will take her guidance from them. She will do what they suggest. Eileen reassured me on Monday she isnt going anywhere. That she will be here for us for as long as we need. That it is and will be our choice when we finish therapy. But what if it isnt? What if the funders wont pay for therapy for more than a couple of years. What then?

Its hard to think about. It makes me incredibly stressed just thinking about it.

With my new college course, and the independent living skills course there is also a lot of changes going on with the structure of my days. I will not be able to spend as much time in the basement club as I have been doing. I am afraid of losing that community. Technically I wont, because technically once your a member then your a member for life. I know I can always go back. But when you have been out of the loop for a while it can be daunting to go back again.

I wont be able to go to the basement club once th eindependent living skills course starts. I wont have time. I’ll literally be doing the course from 9 AM until 5 PM every day. There wont be much time for anything because outside of that I’ll have to do my college work for the addiction studies course. I’ll be lucky to be able to keep up with blogs, email and facebook. I hope I will as these are all very important to me.

So yeah a lot of change going on. I just hope I’ll be able to cope with all of it.

Dr. barry says I am fiercely independent

we saw dr barry today. we had a good apt. we chatted and I told her the news about me getting on the independent living skills course. I told her my mom was trying to put obstacles in my way, she wondered why mom was trying to do this.
Is it because she is afraid of losing you?
I am not sure, I said. I dont think so. But its hard to tell really.
Your relationship has grown so much over the last couple of years. Maybe she is fearful of that changing.
Yes, maybe. She did come around eventually to the idea of me doing the course which is good.
Me to dr. barry… I need to do this. I really do. I’m not that independent…
Your fiercely independent! She said. That made me smile.
She believes in me. She sees my determination to do things on my own.
We talked about the did assessment. The funders are almost ready to go ahead with it. The lady whose in charge of funding rang dr. barry. Dr. barry wasnt able to take her call so she is going to ring her back on friday.
She said it looks like it will go ahead soon.
She will have news next week for me.
She’s also going to phone eileen and have a discussion with her about it.
I asked her what exactly she wants out of this reassessment. Guidance, she said. I want to know how the experts are treating did.
I also want to see if there are pharmalogical things regarding your meds that they can suggest.
So its really happening, and soon!