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You know how the story begins. The bit about trying to get HRT, that magic wand to give puberty a second wind, to drive changes in one’s body and mind in the desired direction, towards one’s correct gender. To get you nearer to where you need to be. I’d first gone to my GP near the start of 2013; and then, near the start of 2015 (yes, I think I was lucky – I only had to wait 24 months), I was at last on a combination of a T-blocker injection, and oestrogen. Those sweet little magic pills, twice a day.

Of course, with a second puberty, just as with the first, you expect major changes to the body. It would, perhaps, be surprising if it were all plain sailing. So when the symptoms first started appearing, I didn’t really think much of it. Raynaud’s Phenomenon, I now know it to be called: for me, basically an inability to regulate the temperature in my hands, in my fingers. On a warm sunny day, my hands could feel as cold as if I was making snowballs in winter. And then, just as suddenly, they’d feel like they had a fever – just in my hands, you understand – and I would have to run them under ice-cold water to get them to feel anything like comfortable.

Thankfully, this didn’t last long. Maybe 3 months or so. But then, it was replaced by something worse.

Just as I’m starting to enjoy the softer skin that oestrogen was giving me, my hands start doing almost the opposite: they develop patches of thicker, rougher skin that have never been there before. Small patches at first, then gradually covering most of my fingers and thumbs. Meanwhile, the palms of my hands, down to the wrists and up to the fingertips, have gone raw, shiny and red. That thick skin, especially at my fingertips, develops deep lines, that become cracks, that then open up and bleed. Generally only one open cut at a time, which then heals after a couple of weeks or so. But then, I’m looking with suspicion at those deep lines in my fingers, on my thumbs, wondering which one will give way next, which one will be the next to break open, the next source of my pain. And then one does split open, and round we go again.

I crave soft, pale, feminine hands; but instead I have bright red palms, my fingers bleed, and my rough skin catches on everything.

Summer, 2015. I suddenly realise that my hands aren’t as flexible as they should be. I can no longer grip small-diameter objects (for example, to open a soft drink bottle top), or manipulate small objects (coins, keys), or make a fist. My hands no longer have the strength to hold and operate spray aerosols, such as deodorant. I realise that, at some point and without realising, I’ve also changed the way I hold my toothbrush, because I can no longer hold it the “right” way, the way I’d normally hold it. When the hell did that start? My fingers become puffy, my rings no longer fit. I get a lot of cramp, too, in my legs and hands. At one point, when I flexed my fingers, I could feel the creaking of the tendons within the palms of my hands. Eww. I’m glad to say, that particular symptom went away pretty quickly.

A few months earlier, just after starting HRT, I had allowed myself to be discharged from the Charing Cross GIC. Now, a few months later, I’m back at my GP, wanting to go back to the GIC again. I can’t help but notice the connection: I start HRT; the problems with my hands start. Coincidence? I don’t know. That’s why I want to go back and ask them. But of course, this part of the story is one that you can guess: the GIC are not quick to respond.

September. My hands are getting worse. I’m also getting a lot of pain in my ankles and knees: for example, if I’ve been sat with my colleagues having lunch, it can be agony trying to stand up again afterwards. That’s new, that’s not cool. Oh, and my hands are curling inwards – I have to really fight to flatten my hands enough to touch palm-to-palm. Hands curling backwards slightly – as healthy hands can – is way beyond my abilities. So I’m trying to get in touch with the GIC to hurry things along, or to at least get confirmation that I’m back in the queue. But no, trying to get information out of them, between appointments, is like trying to get blood out of a stone. I chase them for a month, to no avail.

Late September: I have a cough. I just can’t shake it. On and on it goes, and of course I go to my GP after the first few weeks, but they’re no help. Mid-December, and the cough is a lot worse. One evening at home I have a coughing fit while on the stairs, and it’s all I can do to stop myself falling back down the stairs to the hallway. I go back to my GP, again. I tell them all of these symptoms, and explain the difficulty being re-admitted to the GIC. I ask to be referred to a different GIC, but he refuses.

Late December 2015, and the doctor has suggested I go to see the asthma nurse. I use an inhaler for a while, but it makes no difference. And then, just as I’m about to leave, the nurse asks to look at my hands. Have I had trouble with very cold fingers, she asks? I tell her yes, I tell her all about that, and the cracking skin, and the redness, and the stiffness. She refers me to the local hospital.

Finally. We’re getting somewhere.

I forget the exact order, but I’m sent for two CT scans, a lung biopsy, an echo cardiogram, several lung function tests, and probably others that I’ve forgotten. The chest clinic refers me to the rheumatism clinic. The doctor at the rheumatism clinic immediately suspects the problem, refers me to a specialist hospital, and at last I have a name for this condition (although it’s unconfirmed at this stage): “Scleroderma”, from the Greek skleros, meaning “hard”, and derma, “skin”.

Whereas February and March 2016 were are blur of appointments, tests and consultations, suddenly, things went quiet. I waited. The only treatment I’d been given so far was a cough suppressant. Needless to say, this did nothing for my hands, which continued to crack open. I tried various moisturising creams, but nothing really worked. I slathered it on at night, and wore white gloves in bed, to keep the cream in place, next to my skin. I took baths, with added moisturising oils. It all barely helped, if any.

I found it hard to eat and swallow. Mealtimes became hard work, a slog just to try to get the food down. I’d often abandon part of my meal uneaten, not because the food wasn’t fine (it was), and not because I was full (I wasn’t), but simply because I was bored and tired of taking so damn long to eat anything. I choked a lot, too – several times during 2015 / 2016, my wife was seconds away from having to call 999. I got a lot of congestion and phlegm which refused to shift, and sometimes made it hard to talk.

At work, I struggled. I’ve got a desk job, but it still sometimes involves walking around the building from room to room, and if nothing else, the office is still a long way from home, two hours in each direction. To that extent, even just turning up for work was a physical challenge, and one that I was increasingly unable to meet: I’d get to work, and immediately I’d be exhausted, useless. Why am I doing this, again? I arranged to work from home 2 days a week, but even that wasn’t enough. Surely this wasn’t sustainable. Work referred me to Occupational Health, which was (from my point of view) basically a waste of time: no amount of workplace assessment, and getting me different chairs, or keyboards, or adjusting my monitors, is going to help me regain lung capacity. You know what would really help? Not having a two-hour commute.

For maybe 4 months or so, I start using the Priority Seats on trains. You know, the seats nearest the doorways, the ones that people often offer to pregnant women. I hate having to ask, because, well, I hate admitting to myself that I’m ill, and I hate disturbing people, and therefore possibly confronting them. Some people are really nice: they surrender the seats quickly, without question:

Me: “Excuse me, may I have the priority seat please?”
Man sat in seat: “Why?”
Me: “Because I need it.”

That worked. But sometimes, things aren’t so smooth. Once, I’ve run for the train – but when I say “run”, my lungs really don’t let me run very fast. My running is basically the same as other people’s brisk walking.

Me (very much out of breath and ready to keel over): “Excuse me, may I have the priority seat please?”
Man sat in seat: “You can’t just have a seat just because you’re a bit out of breath”
I think of all of the hospital appointments I’ve been to, the CT scans, the echo cardiogram, and far more.
Me (between catching breath): “I’m not here to discuss my medical history”, and I repeat my request for the seat.
The man, very reluctantly, moves.

Or the one where the man in the priority seat asked if I was pregnant (well, correct gendering, so that’s nice), but when I refused to answer on the basis that my medical details were none of his business, he in turn refused to vacate the seat.

Let me be quite clear: At this time, nothing would give me greater pleasure than being healthy enough not to require the priority seats. Before I was ill, I used to be quite happy sitting on the floor of the train, even if there were seats: someone more needy could sit there. But with this illness, my mobility was significantly impaired: sitting down on the floor, and getting up again afterwards, were hard now. I had to really think about how to do so. Standing up by myself would take time, and thought, and planning, and a lot of space. Often, I accepted the help of friends or strangers.

I’ll admit it: I was worried. Where would all of this lead? Would I regain the full use of my hands? Could I become as mobile as I used to be, until only recently? Would I have to stop taking HRT? In mid-2015, I’d made the decision that I did want GRS – but would this illness be an impediment to me achieving that goal? HRT and GRS obviously meant a lot to me, and there seemed a very real possibility that they might be in danger.

Eventually, in late 2016, the appointment with the specialist comes through: the Royal Free Hospital, in north London. Yet another day off work, but, whatever it takes: I’m there for probably about 3 hours in all, various tests, and consultations, and so forth. They tell me that they’re sure I have Scleroderma, but they’re not yet sure what kind. It’s an auto-immune condition, and in my case, it’s causing thickening of the tissues in my ankles, knees, hands, and lungs. I have scarring at the base of my lung which I’m told will never get better; this has reduced my lung capacity. And additionally, the thicker lining of the lung means that oxygen is not absorbed as easily into the blood, and so even the capacity I do have isn’t working as well as it should.

After I’ve seen one of the doctors, someone else more senior comes in to meet me: a professor. He’s very excited. Scleroderma, he tells me, is a condition that affects around 1 in 5000 people, and it affects women five times more often than it affects men. He’s very interested in the fact that I’m transgender, and that my symptoms started at the same time as I started HRT. I belong to two uncommon sets of people – transgender, and Scleroderma – and I lie at the even-rarer intersection of the two. I feel like a hard-to-find research data point.

This point in the story, by the way, is where my GRS happened. Fun thing about that: at the pre-op consultation, I said I had Scleroderma, and rheumatism in my hands, and the surgeon asked me if that was going to stop me being able to dilate. Of course, I said “no” – I didn’t want to say anything that was going to jeopardise my transition! Truthfully, though, the answer should have been “I don’t know”, since by that point, I didn’t really know exactly what GRS aftercare actually involved. As it turned out, yes, my condition did make a few things a bit harder – mainly getting into and out of the bath. But basically, practice makes perfect: I had to do it several times a day, and I quickly became quite good at it.

A few months later, early 2017, and I return to the Royal Free for more tests. And at last: now, two years after the problem started, I finally get to start medication to actually treat this condition. In fact, it’s a cocktail of 4 different drugs and 3 vitamin supplements, all on top of the HRT.

So at last, to mid 2017, to the present day. Things are getting better now. The cracking open of the fingers – “digital ulcers”, they called it – went on for something like 15-18 months, then stopped. The redness on my hands has improved, but could still be better. My lungs aren’t quite as good as they used to be, I think, but they’re far better than they were at their worst. I can flatten my hands, and even bend them back slightly. And, small victories: I can now open soft drinks bottles on my own – I no longer have to ask friends and colleagues, or indeed strangers in the street, to open them for me. I still can’t make fists, but that’s getting closer.

So far, I’ve been on the medication for 3 or 4 months, and the signs are looking good. I think they’re thinking this might take 3 years or so in total. There’s a bit of a way to go yet.

The timeline of this illness has been entangled with the timeline of my GRS, and subsequent recovery. I’ve achieved most of what I wanted from my transition – second puberty is a work in progress of course – but those soft hands are still proving somewhat elusive. I keep taking the medication: the pills, the gels, the creams. And I keep moving towards the life I want to lead, one step at a time.

 


Read more about Scleroderma at NHS Choices or at Scleroderma & Raynaud’s UK

Image via Wikimedia Commons under Public Domain