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  • Rachel <rachelwithglasses@hotmail.com>
    Hi there. It s been ages since I ve posted but ***not*** because anything is boring here! Elaine knows a bit about it - basically I ve been quite ill - but I m
    Message 1 of 5 , Jun 4, 2003
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      Hi there. It's been ages since I've posted but ***not*** because anything is
      boring here! Elaine knows a bit about it - basically I've been quite ill - but I'm
      now back, a bit older, a teeny bit wiser, and a helluva a lot deafer.

      Can I ask a question to the group. How does everyone get on with sight tests?
      It wasn't until my hearing got bad that I realised just how much of what
      opticians ask you to do depends on hearing them while you can't see their
      faces - either because you are peering thorough some contraption at the time,
      or because its dark, or both. I am prompted to ask this after a recent sight test
      which almost descended into farce as I couldn't hear anything I was asked to
      do. And it's a bit much when an eye test turns into a hearing test.

      Actually the optician was great about it once she realised that nothing was
      getting through. But it still wasn't easy for either of us. I'm blind as a bat so I
      need to go for quite regular checks - and I've thought about this issue several
      times before but never asked people what they think.

      Nice to be back. This is always such a friendly site.
      Rachel
    • Saffron <bel@planet-save.com>
      Hi Rachel, It s so nice to see you posting here again! Thanks for your very nice message. So sorry to hear that you have not been well and that your hearing is
      Message 2 of 5 , Jun 4, 2003
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        Hi Rachel,

        It's so nice to see you posting here again! Thanks for your very nice
        message. So sorry to hear that you have not been well and that your
        hearing is a lot worse. Could you remind us what causes your hearing
        loss (sorry, I have forgotten)?

        About the eye tests, I really know what you mean, from both points of
        view, the tester and the person being tested.

        From the tester point of view, I worked at Moorfields Eye Hospital in
        London as a clinical research ophthalmic technician and tested many
        patients every day for 5 years. I was working in glaucoma research,
        so many of my patients were elderly and had some degree of hearing
        loss. Some of them were profoundly deaf. I remember the first time
        one particular deaf lady came for the tests, she was terrified. Her
        husband came to me and immediately said: "my wife is deaf, if she
        goes in that room, in the dark (the tests were performed in a dark
        room with little ligths on a screen), she won't know what you're
        telling her and what to do, as she has to lipread. I immediately
        reassured him and told him that I was hard of hearing myself. Showing
        the lady my hearing aid made her feel much more comfortable, I must
        say! Anyway, I explained the tests to her before we went into the
        room, as two patients were tested in the same room at the same time
        and I couldn't turn the light on in there. I said I would tap on her
        shoulder if I wanted her to stop the test or if she was doing
        anything wrong. I must say, the tests didn't involved permanent
        interaction with the patient, as they were semi-automated. However,
        there were other tests, like taking pictures of their retinas, etc,
        which required lots of interaction. In those cases, I always made
        sure the light was on when talked to them and I explained well what I
        needed them to do before each step. It took longer, but it was very
        rewarding for me and very reassuring for the patient. With patients
        with less severe hearing loss but who obviously struggled to hear me,
        I made sure that I stopped the test if I needed to talk to them and
        that I faced them and spoke clearly. Since it was a research clinic,
        patients came back 3 times a year and they got to know me well. I
        noticed that those who were hard of hearing or deaf specifically
        asked to be tested by me! I tried to train all my colleagues
        (technicians, secretaries and doctors) in deaf awareness, but they
        didn't always remember how to talk to deafened patients, though they
        did generally make an effort (the doctors I worked with also learnt
        not to shout at every elderly patient, or at deaf patients for that
        matter!).

        Now, from a patient point of view, I know just how much more
        difficult it is, particularly with people who just don't have a clue
        of what being deaf or hard of hearing means. I did all the tests at
        Moorfields as a patient myself, as a "guinea pig" and even though my
        colleagues who tested me knew of my hearing loss and I knew them well
        and also knew the tests well, I often struggled to tell when they
        wanted me to do what! Not only can we not see their lips when having
        our eyes tested, but they are usually also often looking away,
        towards the target, which means that their voice is going in the
        wrong direction! I also wear glasses for driving and for reading
        subtitles on television and have a family history of glaucoma, so I
        have regular eye tests too. At my last eye test at the high street
        opticians, I found it a bit stressful at first. I immediately told
        the optician I was very hard of hearing, as I walked into the room.
        However, he was really quietly spoken and I had to ask him to repeat
        (that was when I was looking at him!). Before he actually tested my
        refraction, I said to him: "you will have to speak up and clearly, or
        I won't have a clue of what you're saying to me and there won't be
        any point doing the test". I wasn't rude, but was quite emphatic and
        it worked, he spoke up and clearly! If you are profoundly deaf, then
        it's a question of patience, I believe... the optician has to explain
        first... something like: "I will put 3 lenses in front of your eye,
        and you will have to tell me which one is best for you, No 1, 2 or 3.
        Each time I start a new set, I will tap on your shoulder to let you
        know"... I don't think it's that complicated, if the optician is
        really willing to co-operate and sympathetic. I really don't think
        that they should think of it as a horrible or painful experience. If
        anything, it may make their day less dull and more challenging /
        interesting, as well as rewarding. Of course, it's worth helping them
        to help us by suggesting how they communicate with us, as it's often
        not obvoius to them.

        Well, I don't really know if all this ramble has helped at all...
        lol! I think I merely tested the obvious! LOL... but basically, as
        someone who tested patient's eyes many times, I really don't think
        that testing a deaf person takes that much more effort at all, just a
        little adjustment and willingness.

        Hope your next visit to the opticians is less stressful!

        Take care,

        Saffron
        x

        --- In hardofhearinguk@..., "Rachel
        <rachelwithglasses@h...>" <rachelwithglasses@h...> wrote:
        > Hi there. It's been ages since I've posted but ***not*** because
        anything is
        > boring here! Elaine knows a bit about it - basically I've been
        quite ill - but I'm
        > now back, a bit older, a teeny bit wiser, and a helluva a lot
        deafer.
        >
        > Can I ask a question to the group. How does everyone get on with
        sight tests?
        > It wasn't until my hearing got bad that I realised just how much of
        what
        > opticians ask you to do depends on hearing them while you can't see
        their
        > faces - either because you are peering thorough some contraption at
        the time,
        > or because its dark, or both. I am prompted to ask this after a
        recent sight test
        > which almost descended into farce as I couldn't hear anything I was
        asked to
        > do. And it's a bit much when an eye test turns into a hearing test.
        >
        > Actually the optician was great about it once she realised that
        nothing was
        > getting through. But it still wasn't easy for either of us. I'm
        blind as a bat so I
        > need to go for quite regular checks - and I've thought about this
        issue several
        > times before but never asked people what they think.
        >
        > Nice to be back. This is always such a friendly site.
        > Rachel
      • Rachel <rachelwithglasses@hotmail.com>
        Hi Saffron! Salut - tu vas bien? It s so good to be chatting to you guys again. That s all so interesting - and a bit nostalgic for me as I was in and out of
        Message 3 of 5 , Jun 4, 2003
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          Hi Saffron! Salut - tu vas bien?
          It's so good to be chatting to you guys again. That's all so interesting - and a bit
          nostalgic for me as I was in and out of Moorfields very regularly between the
          ages of two and four years old for various bits of surgery (like I said, I've got
          pretty dreadful eyesight - I'm slightly cross-eyed (!!) and severely myopic -
          minus 17 or so if that means anything - and at the moment I've got a detached
          retina scare because of my myopia which apparently makes this a probablitiy).
          Anyway, everything you say is really fascinating, and I so wish I had a tester
          who was HoH/deaf and understood the issues - those patients of yours were
          really (I mean really!!) lucky. The thing is, as you say, that even really
          experienced professional eye people are a bit phased when a deafie turns up
          for testing. And after my episodes a few months ago, I'm so deaf that "HoH"
          doesn't really give an accurate picture. Saff, I'm deaf now - pure and simple -
          somewhere around 110-120db deaf. So as was feared when I was first
          diagnosed, it's a progressive thing (initially a "virus" caused it - allegedly) and it
          seems to have progressed a lot faster than I'd have chosen. Never mind - apart
          from my speech going completely dreadful (s, t, d etc. are sounds I don't much
          enjoy trying to make any more, as I know they come out wrong...) but I really
          am quite positive about things otherwise. Honest, I am, though I wish my
          partner wasn't a wonderful musician whose playing I can't really hear at all any
          more.

          But there's some potentially very good news. Because I'm quite young, things
          are looking quite promising for an assessment for an implant. Not sure what I
          think of that yet since I know they are not ideal, but I don't feel culturally Deaf,
          and I don't have the necessary skills in terms of signing, so I want to find out
          more about cochlear implant possibilities. In the meantime, I need to get my
          eyes sorted out!! I sometimes wonder if I'm falling to bits (and one of my retinas
          certainly is doing that...hence the scare)

          Talk to you very soon I hope. It's great to be back on such a friendly site.
          Love, Rach

          --- In hardofhearinguk@..., "Saffron <bel@p...>" <bel@p...>
          wrote:
          > Hi Rachel,
          >
          > It's so nice to see you posting here again! Thanks for your very nice
          > message. So sorry to hear that you have not been well and that your
          > hearing is a lot worse. Could you remind us what causes your hearing
          > loss (sorry, I have forgotten)?
          >
          > About the eye tests, I really know what you mean, from both points of
          > view, the tester and the person being tested.
          >
          > From the tester point of view, I worked at Moorfields Eye Hospital in
          > London as a clinical research ophthalmic technician and tested many
          > patients every day for 5 years. I was working in glaucoma research,
          > so many of my patients were elderly and had some degree of hearing
          > loss. Some of them were profoundly deaf. I remember the first time
          > one particular deaf lady came for the tests, she was terrified. Her
          > husband came to me and immediately said: "my wife is deaf, if she
          > goes in that room, in the dark (the tests were performed in a dark
          > room with little ligths on a screen), she won't know what you're
          > telling her and what to do, as she has to lipread. I immediately
          > reassured him and told him that I was hard of hearing myself. Showing
          > the lady my hearing aid made her feel much more comfortable, I must
          > say! Anyway, I explained the tests to her before we went into the
          > room, as two patients were tested in the same room at the same time
          > and I couldn't turn the light on in there. I said I would tap on her
          > shoulder if I wanted her to stop the test or if she was doing
          > anything wrong. I must say, the tests didn't involved permanent
          > interaction with the patient, as they were semi-automated. However,
          > there were other tests, like taking pictures of their retinas, etc,
          > which required lots of interaction. In those cases, I always made
          > sure the light was on when talked to them and I explained well what I
          > needed them to do before each step. It took longer, but it was very
          > rewarding for me and very reassuring for the patient. With patients
          > with less severe hearing loss but who obviously struggled to hear me,
          > I made sure that I stopped the test if I needed to talk to them and
          > that I faced them and spoke clearly. Since it was a research clinic,
          > patients came back 3 times a year and they got to know me well. I
          > noticed that those who were hard of hearing or deaf specifically
          > asked to be tested by me! I tried to train all my colleagues
          > (technicians, secretaries and doctors) in deaf awareness, but they
          > didn't always remember how to talk to deafened patients, though they
          > did generally make an effort (the doctors I worked with also learnt
          > not to shout at every elderly patient, or at deaf patients for that
          > matter!).
          >
          > Now, from a patient point of view, I know just how much more
          > difficult it is, particularly with people who just don't have a clue
          > of what being deaf or hard of hearing means. I did all the tests at
          > Moorfields as a patient myself, as a "guinea pig" and even though my
          > colleagues who tested me knew of my hearing loss and I knew them well
          > and also knew the tests well, I often struggled to tell when they
          > wanted me to do what! Not only can we not see their lips when having
          > our eyes tested, but they are usually also often looking away,
          > towards the target, which means that their voice is going in the
          > wrong direction! I also wear glasses for driving and for reading
          > subtitles on television and have a family history of glaucoma, so I
          > have regular eye tests too. At my last eye test at the high street
          > opticians, I found it a bit stressful at first. I immediately told
          > the optician I was very hard of hearing, as I walked into the room.
          > However, he was really quietly spoken and I had to ask him to repeat
          > (that was when I was looking at him!). Before he actually tested my
          > refraction, I said to him: "you will have to speak up and clearly, or
          > I won't have a clue of what you're saying to me and there won't be
          > any point doing the test". I wasn't rude, but was quite emphatic and
          > it worked, he spoke up and clearly! If you are profoundly deaf, then
          > it's a question of patience, I believe... the optician has to explain
          > first... something like: "I will put 3 lenses in front of your eye,
          > and you will have to tell me which one is best for you, No 1, 2 or 3.
          > Each time I start a new set, I will tap on your shoulder to let you
          > know"... I don't think it's that complicated, if the optician is
          > really willing to co-operate and sympathetic. I really don't think
          > that they should think of it as a horrible or painful experience. If
          > anything, it may make their day less dull and more challenging /
          > interesting, as well as rewarding. Of course, it's worth helping them
          > to help us by suggesting how they communicate with us, as it's often
          > not obvoius to them.
          >
          > Well, I don't really know if all this ramble has helped at all...
          > lol! I think I merely tested the obvious! LOL... but basically, as
          > someone who tested patient's eyes many times, I really don't think
          > that testing a deaf person takes that much more effort at all, just a
          > little adjustment and willingness.
          >
          > Hope your next visit to the opticians is less stressful!
          >
          > Take care,
          >
          > Saffron
          > x
          >
          > --- In hardofhearinguk@..., "Rachel
          > <rachelwithglasses@h...>" <rachelwithglasses@h...> wrote:
          > > Hi there. It's been ages since I've posted but ***not*** because
          > anything is
          > > boring here! Elaine knows a bit about it - basically I've been
          > quite ill - but I'm
          > > now back, a bit older, a teeny bit wiser, and a helluva a lot
          > deafer.
          > >
          > > Can I ask a question to the group. How does everyone get on with
          > sight tests?
          > > It wasn't until my hearing got bad that I realised just how much of
          > what
          > > opticians ask you to do depends on hearing them while you can't see
          > their
          > > faces - either because you are peering thorough some contraption at
          > the time,
          > > or because its dark, or both. I am prompted to ask this after a
          > recent sight test
          > > which almost descended into farce as I couldn't hear anything I was
          > asked to
          > > do. And it's a bit much when an eye test turns into a hearing test.
          > >
          > > Actually the optician was great about it once she realised that
          > nothing was
          > > getting through. But it still wasn't easy for either of us. I'm
          > blind as a bat so I
          > > need to go for quite regular checks - and I've thought about this
          > issue several
          > > times before but never asked people what they think.
          > >
          > > Nice to be back. This is always such a friendly site.
          > > Rachel
        • Saffron <bel@planet-save.com>
          Dear Rachel, Thanks for all the lovely things you say about the group, it s really nice to have you back too! You brought the group back to life after a very
          Message 4 of 5 , Jun 5, 2003
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            Dear Rachel,

            Thanks for all the lovely things you say about the group, it's really
            nice to have you back too! You brought the group back to life after a
            very quiet week (I think the warm weather might be to blame,
            certainly in my case anyway!).

            I'm so sorry to hear about all your difficulties with your ears and
            eyes. I thought my hearing was going fast, but oh my, yours seems to
            have really plummetted since you were last here! It seems to have
            gone from mild/moderate loss to profound in less than a year? Your
            attitude is great, congratulations on being so strong and so
            philosophical about it all! I hope that the cochlear implant suits
            you. I imagine it should suit people with rather sudden loss better,
            but I'm no expert on this. Make sure you ask lots of questions and
            demand honest answers, as CI are not always suitable for everyone and
            some doctors seem a bit too keen to go ahead with them. However, I
            have heard CI patients talk about their experiences and most of them
            seem really delighted with them. There is also some hope for the
            future. Last year, I contacted a German company called Otogene and
            they're researching into inner ear cell regeneration. They told me
            that they were quite hopeful that they would be able to identify the
            gene that stops ear cells from regenerating in mammals (unlike in
            birds, where they regenerate naturally) and from there, they hope to
            be able to find a drug that would inhibit that gene (they rather over-
            optmistically hoped to have found and tested a drug within 7 years!).
            I also contacted a professor in the States, who very kindly replied
            to me personally on several occasions, and he is at the forefront of
            this research. He says he believes it's possible, but we are still
            quite far from a breakthrough and research on humans and he's not
            absolutely certain it will ever be possible. I'm hopeful that within
            my lifetime, there will be a cure for deafness, though I doubt it
            will suit me, because I can't even get on with digital hearing aids.
            My brain just doesn't seem to adjust to new sounds anymore. By the
            same token, I doubt that CI implants would help me, as I have been
            wearing the wrong aids for my type of hearing for too long, which
            means my brain has "forgotten" those sounds and can no longer make
            sense of them. This doesn't happen with everyone by the way. Some
            people who have been profoundly deaf for a long time benefit from CI
            very much, to a point that they can even use the phone again.

            About your eyes, gosh, -17 diopters! That is really myopic (I'm only -
            1.00!)! I'm sorry to hear about your retina. One of my best friends,
            in Portugal, was also very myopic. She had laser surgery to correct
            her myopia, though it wasn't as efficient as she would have hoped,
            because she was also very astigmatic, but she can now do without
            glasses for normal tasks, when before, she needed -12 D, I think, so
            it's a real improvement from where I'm standing! After the surgery
            (apparently a coincidence), she had a partial retinal detachment (may
            have also been because she was so short-shighted, as the shape of the
            eye inside doesn't change after laser surgery, so the problem of a
            very long oval eye was still there). I think that she had laser
            surgery for that too and lots of rest (though there are various
            schools of thoughts on whether people should remain still or move
            after treatment for retinal detachments). Anyway, she is OK now,
            thanks God. Where abouts do you live? You could ask to be referred to
            Moorfields Eye Hospital again. You really should seek the best
            medical care for your eyes. Eyes are always so important, but for
            you, even more so, since you have gone deaf. I can try and find out
            who would be best for you to see at Moorfields. A friend of mine is a
            consultant there and I think he works in medical retinal clinic, his
            name is Carlos Pavesio, though we haven't been in touch for a while
            now.

            I hope that your eyes will settle and that whatever you decide
            regarding the cochlear implant will be the best decision for you. It
            may be a good idea to find a mailing list like this one, for CI
            implant people. I can see if I can find something, if you wish?

            Take care and please, do keep posting, it's so nice to read you!

            Love,

            Saffron
            x
          • Rachel <rachelwithglasses@hotmail.com>
            Dear Saffron, Thanks for your advice and support which I really value - that s one of the great things about this group. Anyhow, you re right about my hearing
            Message 5 of 5 , Jun 5, 2003
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              Dear Saffron,
              Thanks for your advice and support which I really value - that's one of
              the great things about this group. Anyhow, you're right about my
              hearing going very fast, but things were accellerated by my illness and
              I suppose I knew it was going to happen anyway...so I can just about be
              philosophical (though only just sometimes, as you can imagine). Yes I
              have gone from being quite HoH to being profoundly deaf in just over a
              year, but life goes on, and fortunately my work (literary stuff, mostly
              research) depends on being able to read rather than hearing, and I do
              everything by email as far as possible (the phone is a complete
              impossibility now and my speech has got very deaf-sounding too, as I
              think I said). What you say about the implants is just what I thought
              too - I certainly am not going to rush into it, but I don't feel
              culturally deaf (and can't sign much) so it's something I'm looking at
              in quite a positive way. At the same time, I want to look at all the
              pros and cons, but I have heard some good things, and there are some
              interesting discussion groups about CIs as well which I think I need to
              join rather than just read. But the cell regeneration thing sounds
              absolutely fascinating! Wow. That could really be something.

              You will realise from my prescription why I try to wear contacts most
              of the time!!! I mean a girl has to have some pride in herself (though
              actually I've got some quite cute specs at the moment with tiny
              lenses). But the retina thing is a bit of a worry as vision - even
              vision as abysmal as mine - is something I depend on so much. I live in
              the North West, and there are very good people in Liverpool (where I've
              had some tests) and Manchester. It's really sweet of you to offer to
              contact Moorfields for me. I need to see what's diagnosed and then I'll
              be in a better position to know what to try. I'm hoping it's a scare
              and just that - mais je te tiendrai au courant! Thanks a million for
              such a generous offer!

              OK - back to work. I'll try to post again later. Has anyone else got
              thoughts on the whole sight-testing for deaf/HoH - I'm really
              interested to know what other people think and I'd quite like to write
              a little article about it to post somewhere if enough people respond
              (nothing grand and nothing scientific really - just some thoughts from
              those of us who have been in this weird situation!)

              Love, Rach x



              --- In hardofhearinguk@..., "Saffron <bel@p...>" <
              bel@p...> wrote:
              > Dear Rachel,
              >
              > Thanks for all the lovely things you say about the group, it's really
              > nice to have you back too! You brought the group back to life after a
              > very quiet week (I think the warm weather might be to blame,
              > certainly in my case anyway!).
              >
              > I'm so sorry to hear about all your difficulties with your ears and
              > eyes. I thought my hearing was going fast, but oh my, yours seems to
              > have really plummetted since you were last here! It seems to have
              > gone from mild/moderate loss to profound in less than a year? Your
              > attitude is great, congratulations on being so strong and so
              > philosophical about it all! I hope that the cochlear implant suits
              > you. I imagine it should suit people with rather sudden loss better,
              > but I'm no expert on this. Make sure you ask lots of questions and
              > demand honest answers, as CI are not always suitable for everyone and
              > some doctors seem a bit too keen to go ahead with them. However, I
              > have heard CI patients talk about their experiences and most of them
              > seem really delighted with them. There is also some hope for the
              > future. Last year, I contacted a German company called Otogene and
              > they're researching into inner ear cell regeneration. They told me
              > that they were quite hopeful that they would be able to identify the
              > gene that stops ear cells from regenerating in mammals (unlike in
              > birds, where they regenerate naturally) and from there, they hope to
              > be able to find a drug that would inhibit that gene (they rather over-
              > optmistically hoped to have found and tested a drug within 7 years!).
              > I also contacted a professor in the States, who very kindly replied
              > to me personally on several occasions, and he is at the forefront of
              > this research. He says he believes it's possible, but we are still
              > quite far from a breakthrough and research on humans and he's not
              > absolutely certain it will ever be possible. I'm hopeful that within
              > my lifetime, there will be a cure for deafness, though I doubt it
              > will suit me, because I can't even get on with digital hearing aids.
              > My brain just doesn't seem to adjust to new sounds anymore. By the
              > same token, I doubt that CI implants would help me, as I have been
              > wearing the wrong aids for my type of hearing for too long, which
              > means my brain has "forgotten" those sounds and can no longer make
              > sense of them. This doesn't happen with everyone by the way. Some
              > people who have been profoundly deaf for a long time benefit from CI
              > very much, to a point that they can even use the phone again.
              >
              > About your eyes, gosh, -17 diopters! That is really myopic (I'm only -
              > 1.00!)! I'm sorry to hear about your retina. One of my best friends,
              > in Portugal, was also very myopic. She had laser surgery to correct
              > her myopia, though it wasn't as efficient as she would have hoped,
              > because she was also very astigmatic, but she can now do without
              > glasses for normal tasks, when before, she needed -12 D, I think, so
              > it's a real improvement from where I'm standing! After the surgery
              > (apparently a coincidence), she had a partial retinal detachment (may
              > have also been because she was so short-shighted, as the shape of the
              > eye inside doesn't change after laser surgery, so the problem of a
              > very long oval eye was still there). I think that she had laser
              > surgery for that too and lots of rest (though there are various
              > schools of thoughts on whether people should remain still or move
              > after treatment for retinal detachments). Anyway, she is OK now,
              > thanks God. Where abouts do you live? You could ask to be referred to
              > Moorfields Eye Hospital again. You really should seek the best
              > medical care for your eyes. Eyes are always so important, but for
              > you, even more so, since you have gone deaf. I can try and find out
              > who would be best for you to see at Moorfields. A friend of mine is a
              > consultant there and I think he works in medical retinal clinic, his
              > name is Carlos Pavesio, though we haven't been in touch for a while
              > now.
              >
              > I hope that your eyes will settle and that whatever you decide
              > regarding the cochlear implant will be the best decision for you. It
              > may be a good idea to find a mailing list like this one, for CI
              > implant people. I can see if I can find something, if you wish?
              >
              > Take care and please, do keep posting, it's so nice to read you!
              >
              > Love,
              >
              > Saffron
              > x
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