Tuesday, 8 May 2018

Waiting game

    It's tempting to sit and whine incessantly about one's situation, but after eight years of it and with little changing, there's not much point really, is there. So it seems like an age since I last posted here, in fact it's about two months. I didn't say so back then, but at that point I'd had another surgical referral sent off, and this is where it gets rather complex. 

    The surgeon I want is the most experienced of the UK surgeons who would have been my choice all the way through as he used to be the NHS's main surgeon. He now operates privately, but can see NHS patients through a contract with another NHS trust as he doesn't have his own NHS contract. And the NHS trust have started being awkward about it and want their own surgeons to do the work, so people aren't being referred to him. My referral is unusual, coming via a gender identity clinic that they don't see often and with very insistent wording, so things seem to have gone slightly awry. People whose referrals went in at the same time as me are now getting their dates for surgery with the trust's surgeons, while I've not heard anything. 
 
    That's a dense paragraph, but the result is that I think I may be about to have another setback if I don't do something about it. I've been here before, they stick you on the pile and forget about you for six months, then tell you they can't do it. Not this time, is all I can say.

    So what's to be done? Kick up the mother of all fusses, of course! I feel that over eight years of this have given me the justification to be very prickly indeed, so it's off on the round of ringing up and kicking butt. Gently, but insistently where necessary. And I'm quite happy to turn on the muckspreader if I get bumped out of the system again. I shouldn't have to do this stuff, but nobody else is going to fight my corner for me. Pain in the arse, isn't it.

Getting out there at Maker Faire UK in Newcastle.
   Meanwhile, life goes on. April was spent on the road for Hackaday, a fantastic conference in Dublin followed by a round of smaller events and finally working a show up in Newcastle. There was a time when the gender psychs asked for evidence of your being out in the world, well I think standing up in front of several hundred people and talking about microphones probably qualifies. Flying overseas was a first since transition for me too, 

    All of that plus the referral stuff has left its mark though, I've been increasingly burned-out since the beginning of the year. So I'm on a couple of weeks holiday, not writing and trying to get my sleep patterns back. I started this blog years ago when I was sitting unable to sleep in the small hours, it seems as though I've come full circle.

    The summer looks promising, a couple of hacker camps to go to, plus all the usual highjinks. If all goes well I plan to have the surgery in October, but who knows whether that'll turn out. One thing's definite though, this won't become one of those minute-by-minute surgery blogs that you get from enthusiastic speed transitioners who don't appreciate the meaning of the word "triggery".

    Blogging was a thing, back when I stumbled fro the closet. It may not be so much of one now, but I still like writing as a format. 
     

Wednesday, 7 March 2018

EMDR

    Here we are in March then, after a weekend during which we had unseasonal snowfall over the British Isles, today had a real air of spring. I even saw some bees having a go at our winter blossom bush.

    I last wrote here in December, and that's an unusually long gap for me. It's not been an easy two months, and I've been firefighting to keep my work going. The last eight years have taken a significant psychological toll on me, and facing up to some past traumas from school and other moments in earlier life has come together with the huge stress of a complete loss of trust in the ever changing field of what is possible in my medical pathway to leave me in a bit of a state.

    I have a couple of things today I didn't have a couple of weeks ago though, first I have a proper undisputed referral for surgery, and second I've started therapy for all that trauma and psychological toll I was talking about. I'll believe the surgery is real when I wake up from the anaesthesia and they finally can't take it away from me, but the therapy has been a very tangible thing that has already had an effect.

    EMDR, or Eye Movement Desensitisation and Reprocessing, is a technique for locking away trauma that works under the assumption that the things coming back to bother you haven't been processed by the brain in the way most memories are. As I understand it REM sleep allows us to put away the happenings of the day, into long-term storage if you will, and sometimes that process is not effective and these memories hang around to plague us. EMDR tries to replicate this eye movement while guiding you through some of the trauma, the idea being that it does the same filing task.

   Does it work? Far too early to tell. It's quite intense, and upsetting. I went to a school which I would not send my children too, but that some parents would sell Granny to get little Tarquin into. I didn't choose it, my mother pushed all of us into scholarships at academic hothouse schools, and I was the outsider at every point. Nobody gives a crap about the psychological scars of a shit time at one of the so-called best schools unless someone pulled their knob out at you, so the huge number of people like me with problems in later life that didn't involve anything like that are left hanging. There are support groups for people who went to boarding schools, but in my case I fall through the cracks as a day school pupil. As you can imagine, bringing all that kind of stuff up is ... difficult.

    You are warned that it'll affect you for a few days afterwards, and it's true. I've not been in a good place at all over the last few months, but the last few days since the therapy have been a bit grim. I know it would be a hell of a lot worse with testosterone, I have always said I hated the aggression that came with being a bloke.

    So there we are. Slow, tired, beset by trauma. It will get better, this is part of the therapy. As to the surgery, when that comes is anyone's guess. I've given up. Within the year seem likely though, and that can only be a good thing.

Tuesday, 26 December 2017

The Camera Never Lies

I bought a new phone a few weeks ago, for my business. Its main purpose will be to provide a work email terminal and a wireless hotspot, fitted as it is with a SIM carrying a generous data allowance.
It's a Chinese phone, not simply made there but from one of the well-known Chinese domestic brands, and it's a high quality piece of kit.

As you'd expect these days it's a reasonably vanilla Android, without the cumbersome overlays that dogged phones a few years ago. It has a decent enough camera, and it is this that has provided a surprise. It has a "Beauty" mode. For selfies, and it makes a few tweaks in its software. Evening out skin tones and blemishes, enlarging the eyes very slightly, placing a highlight in the hair, and reducing the chin a bit. It lies, in other words.

So I've been playing with it, and even though I know it's lying, it's a rather useful aid to someone with a nagging feeling that they still look, you know, a little bit blokey. It takes a decade or more from my age, and manages to make me look acceptably enough feminine in my presentation to warm the old cockles of the heart, or something. I know HRT has filled out my face and given me lips because I can see it when comparing with past photos, but as we all know, only we know what the bloke looked like in the mirror and we can all see him sometimes looking back at us.

We trans people have a complex relationship with our own image, and a lot of us never manage to quite come to terms with it. I've had friends who've opted for FFS when they looked fine and returned looking frightful, just to lose his shadow, but my reaction has never been that extreme. It is however nice to see something of the girl in the mirror without the aid of the phone, and then to barely see him at all in the beauty-mode-enhanced version. I am no looker and I am not fishing for compliments, this is merely to express my pleasure at reaching a milestone of the mind. If the camera is supposed to lie, then I'm happy to have found one that does.

Friday, 17 November 2017

It's a long old tunnel

    There comes a point in many blogs in this sphere when they slow down and eventually peter out. Sometimes they end abruptly when a writer decides themselves to have completed their transition, other times people just slowly move on.

    So, if you are one of the regular readers here, you'll probably have wondered about my uncharacteristic silence. I'm not the most prolific of writers here these days because I spend all my time writing for a living somewhere else, but I normally manage one or two posts a month.

    Why the gap then? I'm not leaving, no worries there. No, I had something of a shock a little while back, that has led to a surprising turn of events, and it's given me a lot of ups and downs with a bit heavier on the downs, and taken me a while to get over.

    If we rewind a couple of months or so, I wrote an official complaint about my endocrinology treatment. I've had several years of very poor service, outright neglect from my endocrinologists, and very low levels as a result. The complaint isn't the main story here, but it's relevant.

    Then, in October, I had a bombshell. My surgical referral had been declined, due to an administrative technicality over my referral not coming from a gender clinic. Worse still, they'd sat on it for five months, wasting a significant amount of time.

    I suffer from something rather annoying, atypical facial pain, or AFP. It's a chronic pain condition of the facial nerves, in my case on the left side of the face. It's an extremely intense pain, about as strong as pain gets. I'm lucky, mine responds to treatment, and it's episodic. It comes in attacks, usually triggered by a stress event, and this news triggered one of the worst attacks I've ever had. Three weeks of popping powerful nerve suppressants and painkillers like candy, before it faded away as though it had never been. I suspect if I can time an AFP attack before my GRS I won't care about any pain down there. I'm told some doctors refer to AFP as "The suicide pain" because it can be so bad it drives patients to suicide, and I can believe that. As I said, lucky mine responds to medication.

    As luck would have it I had an appointment with my counsellor about ten days after the news, at which I poured out my tale of woe. I gave her all the paperwork I had, my referrals, the refusal letter, and my written endocrinology complaint. And went into detail about the joys of AFP, which I didn't need to embellish as when an attack's underway it's pretty obvious.

    Four days later, a letter. In it were three pieces of paper. My next counsellor appointment, and two appointments with the senior gender specialist psychs. On the same day, consecutively, in December, at the time about six weeks away.

    That sounds like a reasonable result, you might say. But to anyone who knows the gender identity clinic system, it's remarkable. Such things Just Don't Happen.  Really. I had resigned myself to three six-month waits, and a huge delay. Now I have a likely referral around Christmas, and then whatever wait is needed for my surgeon. Which is another story, but one thing at a time.

    So then, what caused this? I have no idea. My nearly-8-year path through it all perhaps? The AFP? Being able to put "Journalist" under "occupation"? Or my endocrinology complaint? To be honest I have no idea, but something must have pushed the relevant button. I am aware that I am being done a significant favour even if I don't quite know why, and after four years of being messed around by other doctors I'm very grateful to this set for doing it.

    The last few weeks have not been the best, I have to say. Pain and depression are not fun. I dropped out of sight in quite a few other places too, not just here. But maybe there's a glimmer of light at the end of the tunnel, even if it's been rather a long one.

Footnote: I wrote a piece for nGendr about HRT and self-medication, if you are interested.

Friday, 6 October 2017

The Medics And Me

    It sometimes feels as though I never have the chance to sit down and write a personal blog piece, so much of my time being spent chasing tech stories and writing about them. And increasingly these days standing up in front of audiences of hardware hackers, and talking about stuff.
    I've just returned from a walk up the village on a warm Autumn day, past brambles bearing ripe blackberries, past leaves just showing a tinge of russet brown. I've caught the afternoon collection from the post box, and my single envelope should be on its recipient's desk on Monday morning.

    You see, I've just pressed the nuclear button. 

    What I sent off was a formal letter of complaint to the chief executive of the NHS trust whose endocrine clinic has provided my HRT over the past three years, detailing my 2.5 years on HRT, most of which were on a placebo-level estrogen dose, and almost a year of which was on effectively zero testosterone and estrogen levels. I'm within six months of surgery and am still only about two-thirds the level I should be, and I've sacked the clinic in question and found another provider who is competent. 
    The final straw came at the start of last month. I'd had a blood test which gave me 75 pMol/litre estrogen (it should be around 500), and the doctor tried to tell me that was an acceptable level.

    I acidly suggested that if it was so awesome, she should try it for herself.

    That and their losing a blood test meaning I had to have another completely unnecessary one was the final straw. I have been as understanding as I could have been, but after six months of having to badger them all the way for inadequate progress, I'm done. Their house needs to be put in order, and I hope the formal complaint will go some way towards that happening.

    The sad thing about all of this, and being discharged from my GIC a few years ago, is that I have completely lost trust in gender medics. I now go in expecting to have to fight, expecting to be messed around, and questioning everything. I've started with a counsellor at my new GIC, she's a psychiatrist in her own right, and I'm going to have to tell her I can't trust her entirely because my past experience has been universally of people like her taking things away. When I wake up eventually from my surgery, my first thought will be "Finally, they can't take this away from me!", which it shouldn't be. 

    Thanks medics, this is what seven years in the system has done for me. One thing's for certain, when the dust has settled I'm going to write about it. 

Friday, 25 August 2017

An Unexpected Transition Milestone In The Dutch Sunshine

    It's the height of summer, and in the circles I move in, that means it's hacker camp season. I think I've mentioned hacker camps before when I talked about last summer's EMF Camp, for the uninitiated they're akin to a music festival but with the music replaced by the accumulated works of a large cross-section of the hardware hacker and maker community.
    So a couple of weeks ago I made the trip to the Dutch polders for several days in the sun with Europe's hackers for SHA Camp, the latest iteration of the four-yearly Dutch hacker camp. As always it was an amazing experience, I'm still in festival comedown, and life seems like a wasteland until next year's return of EMF Camp. It was my first trip to the Netherlands, I met my friend Stace for an afternoon coffee and pancake, and it was very good to see her looking so happy. Our last face-to-face meeting had been when we were both pre-transition, so there was a lot of water under the bridge.
    At SHA Camp, I found myself unexpectedly in demand. I should explain why, as I've never really brought my everyday life and identity together with this blog because it has its origins in the days when I most definitely inhabited a closet, but now I've been full-time for so many years and am reasonably comfortable in my existence there is little harm in lifting a little of the curtain. I'm self employed, but these days a large proportion of my income comes from journalism, in particular my role as one of the editors of an extremely popular website in the hardware hacker and maker community. If you're wondering why I write a little less here than I should, it's because all my writing-fu is consumed by writing for hackaday.com, and I lack the creative energy after pouring it into that. As the only electronic engineering graduate on the planet whose literacy has been honed by years working for the dictionary you probably have on the shelf, I was uniquely qualified for this work, and have taken to it with enthusiasm over the last couple of years. I get paid to play with tech and write about it, and I still can't quite believe it.
    So as an editor of a website with a huge reach in that community, I find myself in a very novel position indeed. Mine is a name my peers have increasingly heard of, and coupled with my being a very distinctive extremely tall British trans woman, this gives me something of a personal brand in my world. I thus found myself being welcomed into hackerspace villages, shown all the cool stuff, offered cool beer under the Dutch sun. For the first time in my life, I was in demand.
    I was never one of the popular kids at school, and in general as a rather depressive and withdrawn closet trans person I have not been the life and soul of the party over most of my lifetime. So I am unused to this kind of attention, and am at a bit of a loss. It's great to be a part of the vibrant and happening community of hardware hackers and makers, and great to be accepted as who I am. Nobody here knew the pre-transition me, so all they know me only as Jenny who writes for Hackaday.
    And that touches on something else which has vexed me slightly for years. The trans community has its fair share of journalists, but am I speaking out of turn when I say that I find some of them to be a little hard work? So many trans journalists aim to become trans celebrities in their own right, to be the sole voice of what it is to be trans. They are invariably fast-transitioners who have no obstacles in their path because either they pay to go private with all the mod-cons or the NHS doctors ease their passage because they know it'll be written about, and often their perfect transitions are then presented as "the trans experience" without ever acknowledging that for most of us it's very hard work. Their whole brand is built on their being "Trans whoever", "Whoever who transitioned", or "Whoever who used to be another name".
    I'm very pleased to have avoided that, to have become a successful journalist in my field post transition, and to have done it on the strength of my skills outside being trans. I'm not "Jenny who transitioned", "Trans Jenny", or "Jenny who used to be [old name]", I'm just "Jenny who writes about tech", and I value that immensely.
    So in a way, SHA Camp represents an unexpected transition milestone. Not in any medical sense, there's further to go there, but in a socialisation sense. After quite a few years living the life and getting on with it, I've arrived and found my place completely independently of my pre-transition life.
    And it's a good life, after all that's what it's all about, isn't it.

Friday, 30 June 2017

Learning to be body-conscious

    As you get on with your life years after transition, you reach a comfortable point of socialisation that has little to do with medical matters, you are just Getting On With Things. A point at which you are left with the impression that there are few more surprises, you've got it pretty much down.
    So, boobies. It's not been something at which I've expounded on at length here, but yes, as you might expect for someone several years down the line, I have a bust. Not the world's largest, but not the most insignificant either, and even now it is showing signs that it has not yet achieved its full potential. I've been through the need a lot of padding to the need a little padding and the don't need any padding stages, and even the maybe you need a bigger bra stage. I like having them, I like the way they look, I like the way they feel, and I still find wearing a bra to be one of those experiences that just makes things feel right.
    For all that, they haven't really figured much in my interactions with the world. Never been ogled, never been shown off, never been paraded. I didn't wander around without a top on before transition, and not a lot has changed.
    It's been a little odd, one of those surprises, then, in the last month to find myself twice unexpectedly being made aware of them. The first time was for my doctor, who needed to give them a routine examination. No worries, I said, and pulled my top off. To which she reacted with horror, it seems this is something to be done on the examination table with loads of curtains around. Heaven knows why, given that we're in a private consulting room without an audience, but that's the way it is.
    And then a couple of weeks later, I went with a few friends to a small tech/activist camping weekend on an organic farm on the edge of Wales. Very basic camping, inadequate shower, earth loo you have to chuck sawdust into. Back to nature stuff, not too far away from my ethos, so not bad. There I am then, thinking I need a shower but can't face the facilities. The campsite water supply is a cattle trough, it's just after dark on a summer evening, I have the place completely to myself because everyone else is knocking back the cider, and it's sufficiently rural that I can't see any lights. Sod it, I think, I'll just wash myself at the water trough. Which I proceeded to do, a surprisingly pleasant experience. Standing there baring my meagre assets to the darkness, had it been lighter the sheep would have had an eyeful. I should be all ashamed of all this or something, shouldn't I, I thought, but the need not to be all sticky trumped the need for modesty in the face of a rural night.
    I was left pondering the whole thing, where the boundary lies between not attracting untoward attention, and being ashamed of our bodies. Of course I don't want to flash my boobs at people who will give them untoward attention, but the thought of my doctor looking at them or even their briefly seeing the cool air of a summer night in a Welsh field does not perturb me at all.
    What does perturb me is that I am expected to be ashamed of them in such harmless situations. Is it just me who stands back for a minute, and remarks "That's just not healthy!".

Saturday, 27 May 2017

You don't know what you got 'till you ain't got it

It's something well-known, that before any major surgery we trans women must come off our HRT for a period of a few weeks. There's a risk of blood clots, and the effect of coming off is said to be rather difficult as you go from the hormone balance of a young person to that of a 90-year-old in a matter of days.

I can say with complete confidence that this prospect holds little fear for me, because I have been there. For quite a few months I've had next-to-no estrogen or testosterone, and it's something I only got to the bottom of a few weeks ago.

About two years ago, I started my HRT. I was already a couple of years full-time, but had delayed HRT for fertility treatment. I received my hormone patches, and eagerly applied them. In due course after about a year, I received anti-androgen injections, and awaited the changes they would bring.

People say that the switch from T to E in this way can be a rough ride, but it didn't quite work that way for me. I didn't get the hot flushes some people report, instead I got spots, lethargy, intense dysphoria again, and unexpectedly a return of some of the male aspects down there that I thought were long gone. Oh well, I thought, this is the rough ride, it'll pass.

But it didn't, in fact it got worse. And then I had a blood test. Followed by an URGENT letter from my endocrinologist, then an URGENT appointment. About a week after the last of my two trips, so about a month ago. I had precious little of either hormone, and it needed fixing urgently.

What had happened was this: they start you on a very low dose and increase it gradually. In my case, they never increased it, and I remained on the low dose. So I never had the extra E to replace my missing T, and turned into hormonally a very old lady. A state which persisted from the end of last summer until now. I've been prescribed two different upward steps of estrogen patches and have been promised more, and I've also been given industrial strength calcium and vitamin D supplements in case my bones have lost any calcium.

This was very clearly a lapse in the standards of my care, and I told them so. I've been to the NHS's complaints service, but it's worth considering what I am hoping for. I see little point in asking for a head on a plate, as this was obviously an administrative cockup.

Instead, I've asked for three things. First, an accelerated return to proper hormone levels for me. Then, a couple of things for the rest of their trans patients, now and in the future. A commitment to keeping our HRT under constant review, to make sure nobody falls through the cracks as I did. And then for each trans person to receive a clear timetable, on date X we will look at increasing your dose to achieve Y  estrogen level in your blood, and so on.

In myself, I'm feeling a lot better for finally getting the right HRT. I have several steps to go, but it's on its way. Fortunately I don't think I had any other problems for my intensive stay without HRT, it probably wasn't long enough for that.

I can however add this episode to the long list of my being messed around by medical services related to my transition. When I started all this I was a software developer, now I'm a full-time paid journalist. You can be sure I'll write about all this one day somewhere it'll matter.

Saturday, 20 May 2017

Taking Back Control, transition edition

    I've been a little quiet here of late, but with good reason. When your transition is stalled for several years by circumstances beyond your control it can sometimes take a very long time indeed to get back on the treadmill. In my case I found a shortcut, and took it.
    It would normally make me a bit uneasy, taking a brief sojourn into the private sector to get something that could take me two or three more years in the NHS, but since the NHS GIC took a huge dump on me that has already cost me two or three years I feel I've served my time. So in the middle of last month I went to see a couple of private doctors to get my GRS referral letters. They are both people I've never seen before, but since they both have NHS practices I have plenty of friends who've seen them at their GICs.
    This was my first experience of private gender medicine, and all I can say is that it's a very different place from the NHS. Not necessarily better, just different. I only needed two appointments, so the cost was fairly modest in the scheme of private medicine. Enough for a significant belt-tightening for a couple of months, not enough to bankrupt me.
    What makes it different is the access. I had arranged both appointments two and three weeks in advance, by email on my mobile phone, over the course of a half hour walk in the countryside with my friend R. A quick online payment for each, and I was good to go.
    Going to each necessitated a train to London, and since I was there for a day I arranged to meet friends both times. A visit to Tim Hunkin's arcade in Holborn with the first set of friends, then a week later a rather nice cafe with friend 2. She felt she had to warn me it was very discreetly a kink cafe, but as I pointed out: "I Googled it".
    The two clinics were slightly different, one was at the private equivalent of a GP's surgery, the other at a very flashy clinic whose main business was plastic surgery. And immediately upon sitting down in the waiting room it became obvious the main difference between the private and the NHS sector. It may seem an obvious thing to say, but for the first time in my life I was sitting among those transitioners for whom transition is something that can be bought rather than something that is a drawn-out process. I'm used to the GIC waiting room crowd, a mixture of fresh-out-of-the-closet first timers and people who've been in the system for years. The emphasis there is on Real Life Experience, living in role, and due to the delays in the system the patients haven't got much else to do but get on with it. So while the first time MtFs in an NHS GIC waiting room are a little overdone on the presentation front, most of them are in jeans and trainers, lived-in everyday clothes from whatever they are doing with their lives.
    By contrast the private waiting rooms, especially the latter one, were full of high-speed transitioners anxious to get to their goal in as little time as possible. I hesitate to go into detail because it's not really appropriate, but if I say the tone was probably more Sparkle than Trans Pride Brighton you may get my meaning. I have little doubt that within very little time all of those people I saw will have had their visit to the surgeon and consider themselves fully transitioned, but will they really have socialised in the same way as the girl who's been full-time going through the process at an NHS GIC for three or four years and is only just receiving her first surgical referral? I worry that maybe they won't have.
    Both doctors were professional and straightforward, and since I had all the paperwork necessary to prove both my HRT and my time living in role I received an assent from each of them. A few weeks for the paperwork to be processed, and there they are. Back into the system. No idea when my time will come, and when it does I'll probably be rather circumspect about it online because blow-by-blow GRS accounts can be triggery as hell, but at least now I know my day will come. One day.

Monday, 17 April 2017

Complaining: it works sometimes.

   A few weeks ago I made a complaint to the BBC, after a regrettable Radio 4 report about a trans woman prisoner in which she was repeatedly misgendered. I received a reply, which I missed at the time because it went into my spam folder.
Many thanks for contacting us about PM, as broadcast on 21 March 2017.
Thanks for raising with us the pronoun we used during the item on a transgender prisoner being moved to a women's prison - we took this to the editor and those involved in the story.
You're right about the pronoun use during the item. We always seek to use the correct wording, but unfortunately that didn't happen here.
It was an oversight, for which we apologise.
We value the time you've taken to point this out and do seek to use the correct wording.
   So there we are, a straight apology. Most likely not just because of me, but because Trans Media Watch got on their case about it. But without a load of people complaining, we wouldn't be there.

   So keep complaining when you see or hear this kind of rubbish. Sometimes, it works.