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.

9 comments:

  1. Congrats! That's awesome news - an early Christmas gift indeed.

    The optimist in me wants to think your endocrinology complaint raised the right eyebrows, but the realist in me finds it hard to believe "Journalist" didn't help at least a little. ;)

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    1. Thanks. :) I suspect the job title would have helped if I wrote for the Guardian, after all Juliet Jacques had the fastest NHS transition in history, but probably not for a tech journalist like me.

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  2. I can vividly remember the trauma of having surgical referrals knocked back and delayed; sorry it happened, but thank goodness the digit has now been extracted!

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    1. Gosh, I never had an email for half the comments on this post!

      As it happens it's been only partially extracted, one of the doctors was unwell. But A few weeks wait 'til early January is but a minor hicup after the last few years. :)

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  3. I suspect that many of the people who are supposed to care for us simply do not understand the trauma of having to wait, and how much any delays can affect us.

    So glad that they have managed to fit you in for a "Fast Track" referral.

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    1. All I can say is I think this clinic have some idea.

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  4. Waiting on every step of the process reignites anxiety and misery! I thought that they took an oath to do no harm!! Sorry that we never had a chance to catch up this year, never drove down your way. trust that you survive this crazy time of year and hope to catch up in the spring.

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    1. Hi Coline, no worries, there is always next year. Mind you, I may be indisposed. :)

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  5. I shall not be disappointed if you are indisposed for the right reason. Like the new profile snap, could those 'ormones be slowly working?

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