How Safe Are Your Medical Records?

This week I have found myself being challenged not to explode, not to get angry or annoyed when deep down I feel violated and betrayed. Over the past few months I have been trying to access old medical records relating to my time in various mental health units, some mainly NHS operated ones and my old CCG have been very helpful others sadly not so. The private sector operated Partnerships in Care have to put it bluntly been unhelpful, and they haven’t forwarded all the information I requested within the time period set by the data protection.

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Yet their letter this last week threw me into chaos and in a bit of a spin, as I wasn’t expecting them to tell me they couldn’t find my notes. But that’s exactly what these people are now saying, they appear to be unable to locate the notes for a 16month admission including daily nursing records, clinical team meeting notes and most important of all my therapy notes.

The half hearted apology they have sent me doesn’t even begin to do justice to the harm they have caused, in fact I don’t think anything will ever repair the damage fully. I feel violated I feel hurt and why, well in the 16 months I was under their care I divulged some of the most sensitive data to my then therapist and other staff. In therapy I was forced to be explicit, forced to dig into the finer details of my abuse even when I didn’t want to.
My then therapist was trained to focus on making me feel vulnerable and dependent upon her, the three sessions a week were heavy going and hard work. Due to all the internal physical security of locks and swipe cards that epitomise a forensic unit, once I was at a session I had to stay the course. There were many times I sat in silence refusing to divulge details of the abuse or of my feelings, I didn’t trust her but in the end I talked often in frustration and fear. I would find myself having an outburst demanding to go back to the ward, demanding she stop playing the control game she seemed to enjoy. Often in these moments of sheer frustration there were tears and that’s when broken and distressed my abuse history began to pour out. I gave explicit details and I even named my abusers, I talked about them and their actions in as much detail as I did when I gave evidence to the police.
So in our therapy session the discussions; which were always awkward, were detailed and graphic and I hated it, I hated myself and I hated the people who hurt me. But looking back over the years I have felt able to take comfort from the fact those sessions were confidential, well at least in part as I know often what I said was shared with my then clinical team. Yet I felt reassured thinking the hospital had a duty to keep my sensitive information safe, how wrong could I be.

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It has taken the company over four months to write to me and admit they can’t locate my notes, now I could understand his if it was one small file, a few pieces of paper but it’s not! It’s case notes for a 16 month period, that’s roughly 485 days of nursing entries, it’s approximately 150 therapy sessions, 34 clinical team meeting reports and 3 CPA’s, 2 renewals of sections and 2 mental health act tribunal cases and all the necessary reports that they entail. So I imagine it’s more than one little folder of medical notes, after all a 6 month admission without therapy or section paperwork led to 2 folders of case notes.
So I estimate Partnerships in Care have lost about 5 lever arch folders, containing my medical notes in which are some of my most intimate data. Yet all they could send me was a solitary letter saying ‘I apologise we can’t locate your notes’. When I spoke to their registered manager she knew very little in fact she couldn’t even tell me when they last had my notes, where they were or where they are now likely to be. I mean it could be London, Leicester or Leeds perhaps or as I now fear in some public site somewhere accessible to all or possibly dumped in some country lane.
The fact is sorry just doesn’t cut it as I know this is a flagrant breach of data protection and if this were the NHS or the police, people would be jumping through hoops to try and locate my notes. They’d certainly be aware of the data protection act legislation and they’d realise this was a serious issue.

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Now unfortunately for Partnerships in Care I’m not going away quietly I had already contacted the information commissioners office and they do now know my data has been misplaced. They also know it’s contains important data relating not just to myself but other third party individuals, namely my abusers, my family even my children. They are aware my therapy notes are in my opinion as important as my police video interviews, in that they contain the same level of sensitive personal information. I hope they are able to swiftly take action to ensure this private company improves its data management procedures.
I hope too that Partnerships in Care will respond to the letter they are to get next week from myself, copies of which are being sent to the various governmental departments; who pay this company vast sums of money to provide forensic and secure services. These include the local CCG and secure services sector who sent me to their establishments and yet failed to ensure they had adequate data storage processes in place.
My main questions to the company right now is what are they going to do to put this right for me, after all I’m the one whose records it appears you’ve recklessly disregarded and inappropriately handled. I’m the one who feels violated, who has worried over what ifs, like what if my notes are picked up by a random stranger. I’m the one who has felt terribly distressed by the loss of these records, after all I thought my therapy notes, my sensitive data was safe, sadly Partnerships in Care you’ve proved me wrong. They weren’t safe at all from the minute they were written, your companies sloppy data handling processes meant they were lost from the outset.

Copyright DID Dispatches 2015

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Learning More About Myself

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This week I’m trying to work through some issues about myself, it’s odd to think I actually put myself through difficulties by being over critical or judgemental of myself. But apparently I do self judge and it’s not good, I am also inpatient which I didn’t realise fully either until it was spelt out to me the other day.

I have known I’m self critical for some time, I mean I constantly put myself down and yet I had never realised how much I judge myself. In therapy the other day I realised that actually I am repeating behaviours from my past and judging myself. I think part of this is the fact despite thinking I now accept my Dissociative Identity Disorder, in my heart I still don’t, well not fully.

I have always wanted to be normal whatever normal is and I have always striven to just be good enough. As a child and an adult I always wanted to be good enough to be loved by my mum, but I now realise no matter what I did it wasn’t something I could achieve. Not because I lacked something or was flawed but because the women who gave birth to me wasn’t able to love me. It was her flaw not mine and that’s taken me time to both realise and accept.

As a child I was taught only A grades were good enough and so I learnt to judge myself and see myself as a failure when I didn’t quite make the grade. I also learnt to judge myself as a young mum and wife, my mother taught me to judge myself by her actions of judging me.

As an adult I felt a failure when I was mentally unwell and needed to go to hospital, yes some people in society judged me but that wasn’t my fault, those who judged me were being misguided. Since I’ve been home I have continued to judge myself every step of my journey, because it is a natural reaction that has been inbuilt in me by the way I was raised.

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Yet now I realise I don’t need to judge myself in this way, I can be honest with myself and accept my positives instead of being so harsh. This is a strange concept for me and it’s going to take time to get used to but I will, I deserve to. I am having to learn that in truth I don’t know what normal is, who is to say I’m not normal and other people without D.I.D are anymore normal than me. We all have individual strengths and weaknesses, no one is perfect and the reality is society is geared up to be judgemental. But I’m kind of accepting I no longer have to keep on judging myself, I can stop being my own worst enemy and just accept me for who I am.

I’ve also realised that despite trying hard to not be self critical it’s still my automatic response and it’s going to take time to change this. I’m also aware that I find being out of control very difficult too, which is another thing from my past and this is impacting upon me and my alters.

As a child I wasn’t in control, life was chaotic and my abusers were in charge, they dictated how and when I was abused. My mother dictated and controlled everything about my life and I mean everything, who I spoke too, where I went, who saw me, what I ate, what I drank, when I got hit, when I saw my dad, where I lived, who abused me, the list could go on and on. She dictated everything about my existence at that time she had total control.

In hospital the nursing staff and doctors had control and I found that difficult too, but people did not understand why. I sure now that the healthcare professionals who have treated me think I am just a bit bossy, disruptive and maybe even wanting to just be awkward and know too much. Yet the reality is I just desperately need to feel in control, this is out of a desire to not find myself back in that position of terror in my childhood. I fear not being in control of me, my life and what is happening to me, that fear means I do ask lots of questions and I challenge certain rules. If only the professionals understood me then maybe things wouldn’t have been so difficult, I know being sectioned was my worst nightmare for I was truly robbed of control, it was terrifying.

Today though it’s impacting upon my interactions with my alters, the other parts of me and it is causing me difficulties. My desire for control means I can’t willingly give my alters the opportunity to be in control, so instead they take it without warning causing chaos and creating many challenges.

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In therapy I find it hard to let them in, so use a vast amount of energy on trying to not switch, to stay in control. When in truth it would be the best place for the other parts of me to be open, able to express themselves and take over this body that we share. My fear of losing control and all the feelings and fear that this action evokes means I impact upon my therapy in a way I don’t want to. I impact upon my alters too in a way they don’t deserve and this in turn causes me difficulties as we encounter the challenges of switching, losing time and dissociative amnesia.

All of these traits, being self critical, judgemental and fearing a loss of control don’t help me to accept who I am, who my alters are or indeed that I am a fragmented person with many parts. I know all of these things logically, I can explain Dissociative Identity Disorder as a concept and understand it. Yet when I look deep within me my heart hates D.I.D, it hates the fact I lose time and it hates this fragmentation that is me. This has to change in time, because I have to accept who I am and accept my alters if I am going to make progress.

The good signs are that my Psychologist wouldn’t be working with me if he felt I was a lost cause, so he must think I can learn to accept me and Dissociative Identity Disorder. I guess it’s just going to take time and meanwhile I need to learn as much as I can about those traits I have. I’m trying harder to stop being self critical, I’m slowly finding ways of telling myself when I realise I’m judging me and aiming for things that simply don’t exist, perfection is a nigh impossibility if I’m really honest.

I’m still unsure about control and letting go of it to give my alters space I have questions that I need to get my head around and yes it will be different from before because these are parts of me, not people whose goal is to hurt me or abuse me. I know that accepting the alters who I care deeply for is important and whilst I know I hate the fact they rob me of time, I can’t hate them. I have to learn to accept them, accept my D.I.D, I guess if I’m brutally honest with myself I am a bit of work in progress currently.

 

copyright DID Dispatches 2014

Small Steps of Progress on my Journey with Dissociative Identity Disodrer

 

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I want this blog to be honest and open about my life with Dissociative Identity Disorder and yet there are times when it is hard to be so upfront, to write about the things we are doing. Mainly I fear being judged which I know is ridiculous and yet it is one of my biggest fears.

If I’m honest those fears are in a way making it difficult to write, because I do wonder what other people will think about me and in turn my alters, the other parts of me. All my childhood and into my adult years I was judged by one of my main abusers, she’d continually put me down and be critical. Scathing comments about my failings were a daily occurrence, it was as if everything was my fault and I was utterly useless at anything.

Now I know that those comments were wrong and untrue and yet the fear of being judged still haunts me today. It is as if I can’t switch off those ingrained fears and believe systems that stem from my past. Oh if only it were easy to do so my life would be much easier, there are many negative responses and believes that I hold from my past. Not to be so self critical, or feel worthless, not to fear the unknown or being judged, to not dread anything fun – would be life changing.

The reality is of course I have to live with my ingrained developed thinking patterns and believe systems until I can change them. That change does not come easy and I know will take time, patience and a lot of inner strength and bravery on my part.

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So in that spirit of being brave I want to explain about the realities of my internal communication system with my alters, the other parts of me. If you have read my blog for a while you will recall that 6 months ago I didn’t have internal dialogue of any kind. I’d tried of course but things like keeping a journal didn’t work and nothing else seemed to either.

Yet in the past few months there has been progress and it’s quite amazing, I never thought I’d make it this far and yet I know there is much more to be achieved and I’m keen to keep going, to keep trying. Progress hasn’t come easy it’s taken the patience and skill of my psychologist to steer me on the right path and they have needed to keep encouraging me each session. They have also had to deal with my plethora of questions about techniques and face my scepticism too, I know I am not easy to work with.

But progress has also meant me changing how I live my life, the emphasis is now on internal dialogue and on working with the other parts of me, my alters. The reality is that from initially feeling some of their feelings and then one sided internal dialogue, I now have progressed to some co-presence with some of the younger parts, my littles as I call them. It’s random and uncontrolled and it’s not as often as I would like, but it is progress.

I also have begun to communicate with a specific alter, one that clearly holds strong emotional responses of desperation and sadness. This is the part who can overwhelm me without warning and reduce me to floods of tears, she is desperately sad and carries much hurt and pain. I know her as my teen and understand that she will give me a name when she is ready. My teen and I have developed a way of basic internal dialogue that is not one sided, we use a technique that I believe is called ideomotor signalling.

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Now this means I relax, and allow her to take control of one of my hands and she communicates yes or no answers to mine or my psychologists questions using this hand. She indicates her responses to the questions by raising one of the fingers for yes and not raising it when the answers no.  It was rather strange at first and if I am honest I totally disbelieved it at the beginning, but over time I have come to realise this technique works for me and for my alter. I couldn’t give up control of me knowingly, so unless the alters take over me without warning; which they can do, I can’t magically let them suddenly appear. For example I couldn’t just say my teen could have my therapy session and I’d disappear, it’s not possible. So being still present and yet giving her a means to communicate was the solution we needed and ideomotor signals resolve my issues of needing to feel in control.

At the beginning it was odd and I struggled with yes and no questions, it was hard to think of them and so I made a lot of mistakes. Now though a few weeks in and I am slowly finding that questions are easier to find and I can work around issues to ensure we use yes or no questions. My teen seems more able to come forward when I attempt to communicate with her. I know she’s a teen because I asked her, and I know she likes strawberries, I also know internally communicating with her reduces the distress she overwhelms me with, now that is progress.

Now I know that some people will think ideomotor signals are strange and I guess I was very sceptical at the beginning. I challenged my psychologist to explain how it worked in the hope of trying to understand more fully this technique. I knew that when my alter had control I couldn’t move my arm, it felt heavier and yes it felt very weird.

But in the end I think the realities of how it impacts me and my teen alter have reassured me that this works, I really don’t care why I just know it does. The information I have managed to source on the internet also reassures me, this technique is backed up by prominent people within the field of dissociation. The international society for the study of trauma and dissociation contained this technique as an example in their 2005 treatment guidelines. Overall all my fact finding tells me that this technique is basically a form of communication that bypasses the conscious mind, allowing my alters a voice and it seems that it works for me.

Progress comes in many forms and my internal communication with my teen alter has allowed me to make huge steps forward this week, that I don’t think would have been possible without this technique. – I will write about those in a future post.
Copyright DID Dispatches 2014

 

Taking Control of my Own Care -Direct Payments

 

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Yesterday despite feeling nervous I found myself sitting in an hotel lobby area trying to look relaxed and focused as we interviewed the two candidates selected to attended. I think the hardest thing for me was trying to explain what my needs are, and the reason I need support.

How do you explain in a very brief time frame about Dissociative Identity Disorder without giving prospective support workers too much detail, especially when few have heard of DID. It’s funny but I can give a presentation on my condition to a room full of mental healthcare professionals and it doesn’t daunt me, but in these 1-1 interview situations I find it quite daunting just trying to explain what DID is.

Maybe that is a result of my own fears about stigma, in a room full of people I know that even if someone holds biased beliefs about Mental Health I most probably wouldn’t notice. The sheer volume of people is in a way a protective barrier from the stigma that some people hold, there’s a comfort in knowing I will always find someone in a room full of people with some form of mental health issue themselves, so an ally against any skepticism and stigma.

Yet I find on an individual basis I am more likely to see the stigma if it exists and I find difficult, I guess it makes me feel more vulnerable. It is not easy trying to explain to random strangers who have often no interest in DID, that my mental health is the result of trauma and the reason we have care needs.

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The people we saw yesterday were both really nice, but one of them was more willing and open to finding out more about my diagnosis. They spoke to me and my daughter who acts as the employer in respect of my supports workers; she basically manages the direct payment paperwork,  on equal terms. I didn’t feel like I was being judged, stigmatised or treated as different in fact I felt a sense of equality that is often hard to find even at conferences; where both professionals and experts by experience are present.

The end result of the morning interviews was I thought I had at least 1 potential support worker, but I couldn’t just make the decision. I spent a few hours talking internally ensuring that all of me were happy with the decision we wanted to make, it’s crucial as this person will spend hours in our home. Support workers help us so much and yet they see us when we are both good and bad, they will be around when I’m overwhelmed, sad, upset, tearful and many other emotional states too. They see inside my world and know a lot about me, I need to be able to trust them and also feel safe around them it’s a crucial decision.

In the end we made a decision and have offered them a post, I always dread this offer bit as in truth they can now reject us and yes it has happened and it hurts. Thankfully the lady in question said yes and subject to all the checks that now have to be done, she will start working with us soon. I’m glad we have found a suitable person, and I’m sure we will get on fine and soon settle into working together.

Of course we needed 2 staff and there were other candidates, I can’t as yet decide on the others so have further work to do before making a final decision, it maybe that we have to do further interviews I guess only time will tell.

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The concept of Direct payments is a good one, it gives me and my family the ability to control who cares for me, and put us in the driving seat of these decisions. Prior to direct payments care agencies or specific aftercare companies chose who came into our home, they dictated what happened and when. It felt as if in a way I was still in hospital lots of control, rules and regulations, they’d write copious notes about us and I wasn’t allowed to read them. If I had issues with anyone I would have to go through the various company protocols to raise them and I often felt judged.

I have had some really good support workers, dedicated professionals who not only empower me but treat me with dignity and respect. Some have stayed a while whilst others have been with us for only short periods, I felt proud when one of them left to become a psychologist I knew she’d be great and another went off to university because her time spent with me inspired her to achieve.

But sadly I have had those who have failed miserably too, I had one person who would walk into my home, put on the radio and fling open all the windows even if I was cold. When I complained I was seen as the problem, no one understood this wasn’t a working environment to me but my home.

At one point I had staff 24/7 so night time support was the norm, more than one support worker felt it was ok to sleep and snore loudly on a waking night shift. I was awake because of their snoring and yes I can laugh about it now but at 3am in a morning following an horrific flashback It wasn’t funny.

Care agencies are run for profit, in my opinion they put additional barriers between the client and the support workers. Direct payments have changed the way my care is delivered and it’s working better, the interviews are taxing but they provide us with opportunities too. For now I feel in control of my life and that is simply amazing after years of being controlled.

Copyright DID Dispatches 2014

Making my journey with D.I.D bear-able

Making my journey with D.I.D bear-able

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My Little parts are keen for us to introduce our special friend

Ever since my melt down point a decade ago I have had the company of a cuddly creature to keep me feeling safe. Initially this was a rather large creature who filled my arms and to be fair wasn’t so easy to carry. After 2 years my children and I chose a new creature whose size made it easier for me to carry and to discretely transport around.

Now my cuddly creatures are not live animals, no there are teddy bears called Cuddles and Ted, between the they have been with me throughout my journey through the mental health system. Now cuddles was rather cumbersome due to her size, it made it difficult to carry her around and so she is now retired to safe storage but Ted she has been with me for 8 years now and is a daily part of my life.

I’m not afraid to admit I have her, in fact until a couple of years ago I couldn’t leave her at any point in the day. Ted was carried in my arms daily, at home and when we went out she has been a source of comfort and in many ways has given my little alters a sense of grounding and security which has been significantly helpful.

Ted has been with me in all bar two of my acute hospitalisations, she’s been locked in a forensic secure unit and a non-forensic one too, she’s endured being detained by the police when we were repatriated to hospital in the cage of a police van. She’s been with me when I have tried to end my suffering and when I have self harmed, in fact Ted has been through every step of the journey since 2006. She has spent some 130 plus weeks in hospital, her predecessor cuddles spent approximately 65 weeks in hospital.

I guess when I carried her everywhere I stood out, she and I were a partnership and yes she was my security blanket if you like and some patients and certainly some staff found it difficult to deal with this women and her bear. I was unable to cope with life, with the memories and the flashbacks which filled me with dread and fear, with the confusion and anxiety I felt I just wanted the ground to swallow me whole to stop my anguish and my pain.

I can recall being verbally attacked by a stranger who took offence to me and my bear, he said ‘people like you should be locked away’ and I guess that was easy for him to say but I wasn’t always this wreck. I am a mum and I was once a wife, I worked hard and contributed to society I never expected to find myself in a mental hospital nor carrying a bear and yet it happened. I knew I had a tough start in life but I hoped I’d managed to leave it all behind, I thought I had, but then the reality was that it was just hidden away. You see in truth much pain and anguish from my past was hidden deep inside of me waiting to reveal itself when I was least expecting it. I didn’t need a random stranger attacking me for carrying a bear I felt bad enough about myself who I was and the fact I couldn’t cope.

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Ted has been a comfort that I needed through the darkest of days she has been there and I am not ashamed that I needed her. She has kept me grounded at times especially when I have suffered flashbacks and memories. I could keep telling myself & all my alters, all the parts of me that when bad happened we didn’t have Ted and yet now we did and that meant we were safe.

As a child I only recall one teddy bear he came from a bad person as a reward for being ‘a good girl’ for not telling when the person hurt me and yet I loved that bear. I remember coming home from school and my bear being gone, my mother had decided I had to be punished for something and taking that bear away was my punishment. I didn’t have another bear, unlike most children for me toys were rare and they came and they went as a form of control.

When my children bought me Cuddles I was elated and so grateful and yes she served me well when I first hit melt down, but her size made her harder to carry. But like Ted she took so many of my tears as I could hold her and let out the pain that ripped deep into me at that time, I find emotions so hard that it’s impossible for me to explain them to others easily, to express them and yet I needed to.

My cuddly friends have been a part of each day now for a decade and I doubt I could have managed without them, it felt like they were attached to me, it probably looked like that to the world. We were this person who went everywhere with her bear and people became used to that, some became so accustomed to her they no longer saw her.

About two years ago I made the decision to put Ted inside my bag when I went out, she was still with me 24/7 but she was no longer a visual constant in my day to day life. I remember the first time I placed her in my bag I felt bereft, but I knew it was the right time to stop carrying her in my arms all the time. Part of my decision was based upon the fact that my constantly carrying this bear had caused me significant muscular issues which required physiotherapy treatment. For years I had held her in my arm so had held my arm in a bent position this had caused muscle weakness and tension and when I realised that all this pain and discomfort was a result of my needing Ted I knew I had to take action.

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For a further year Ted was still a constant, she was carried around everywhere I went, the doctors, the shops, even for a McDonalds. Then one day I forgot her she was left sat at home on my bed and I ventured off to an appointment, by the time I realised we didn’t have time to return to get her. I had to face the fact that we would have to survive without her for these few hours and of course we did, we managed and it led to more and more organised opportunities where Ted stayed home. I had some control over this so if I was struggling or facing a difficult time Ted came along, but if I felt we could manage well then she stayed home.

Now Ted lives on my bed and there are times she comes with us, so every time we attend psychology she comes along too. When I face Care plan meetings Ted comes too, holidays and other times away from home involving overnight stays she is part of my luggage. But I can now manage without her when I am shopping, or attending the GP’s, visiting friends or going for a coffee. Ted probably spends 50% of her time on my bed and 50% of her time in my bag or on the sofa, it’s a far cry from my carrying her 24/7.

This week I’m attending an event which means I’m away from home, so Ted comes too she will stay part of her time on my hotel bed but I know she’ll be with me when I need her. There will be times when I do need her, times when I feel vulnerable or I am switching more and I need to try and ground myself.

Now it maybe hard for people to understand why I a grown women need a bear but of course parts of me are little and need the comfort a bear gives. She also allows me to know that the past is over and that is so important to me. I am fortunate that my family accept her as a necessary part of my life currently, they don’t nor have they ever judged us. In fact my children who are adults themselves will often say hello to her and they occasionally buy a new outfit for her. It’s as if they understand the role she has and continues to play in our life.

I never expected this small bear Ted would become so important to me and obviously carrying her everywhere day in and day out she has weathered quite a lot, but I can’t imagine replacing her she will just age and become more loved as time progresses. She may not come out with me as often and one day she may just live on my bed, but for now Ted will keep playing whatever role I and all my parts need her too. Be that grounder, comforter or as a sign of reassurance Ted is a significant part of my healing journey and I’m glad she is part of our life.

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Copyright: DID Dispatches 2014