Nurse Karnstein has been doing this job for a very long time.

Today went really well.

Got up to the phlebotomy suite at LGI at about twenty to eleven, and was immediately in the chair since there was no queue. The first phlebotomist looked me over a few times, noted all the bruises, and picked out two or three veins that she thought might work. First, the deep vein on the left arm (“It’s so tiny, but it’s there!”) then the deep vein on the radial side of the right arm (Which was so deep that I didn’t even know it existed), and possibly one of the “So pretty!” surface veins. Phlebotomists always coo over the glowy blue veins in my arms and chest. They are literally so bright that I was once told off by a supply teacher at school for having scribbled on myself in blue highlighter (Never mind the already heinous sin of having rolled up my sleeves on a warm autumn afternoon), and are completely useless for blood draw, since they’re collapsy and soft. She even had a look at the collapsed veins down the centre of my right elbow, which just have no blood in them at all and are thus dark purple, more for her own edification than for any chance of getting blood from them.

So she called in her superior, without even touching a needle to me, and had a good old complain about whatever cackhanded twat had tried to use 21g needles, when a 23 would be more than big enough. She also got a look of horror when I said that the last time I’d been to the LGI to get blood taken, I’d ended up with needles in my femoral artery. She reassured me that “Only the doctors are allowed to go that far off-piste, we’ll just try the arms then give up”.

Her superior arrived, and the blood draw took about three seconds. She picked one of the surface veins in my right elbow, then gently threaded the needle in, narrating “Just under the skin, you’ll probably only feel a single pop, rather than two…” as she went, and then the blood flowed out neatly in one long tap, filling all three vials. She got the needle back out, taped a piece of cotton wool over the puncture, and was done. No fuss, no faffing, no half-arsing about with the wrong kind of needle.

I was free to go, with the results being sent back to my GP.

I may as well mention now that I really like the phlebotomy suite – It’s in one of the older parts of the hospital, built in 1940, and it looks the part. It’s like a set from Carry On Phlebotomy, with tiny wards and sash windows and endlass narrow corridors. It’s also, apparently, due to be sold off, which makes me incredibly sad, along with the original LGI building (1863) and chunks of SC (1904, former contagious disease centre, Where the pain clinic is). I’m not surprised, since getting the old buildings up to modern standards would cost a fortune, and the part of me that cares about accessibility and ease of maintaining hygiene really likes wide corridors, short transfer pathways and double-glazing. I’m just a little wistful, since the hospital is kind of my second home, and a little worried, since moving services from buildings in the city centre, to either share facilities with other services or to take them out to a cheaper plot that’s further away from the transport hub could cause its own problems. I may start taking photographs of the buildings and wards as I go, to have a record of what healthcare actually looks like right now, as well as what the experience is like.

Though living in a flat in the top of that gorgeous Art-Deco inner ear suite would be bliss.

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Nurse Karnstein Will See You Now

Two more failed attempts at getting blood (By a different nurse), who then called in Dr AC to have a look, who marvelled at my lack of useful veins and that even in hot weather and an an armoured leather jacket my hands were blue and cold, checked over both arms, vetoed taking blod from my ankle, and gave me a bag of vials and notes to take to the phlebotomist at the LGI later this week.

They’ve also added to my notes that getting blood out of me is basically impossible, and not a task for the fainthearted or inexperienced, though that I’m thankfully not squeamish and most doctors will get bored of playing pin-the-vein-on-the-zebra before I do.

Personal, personal.

So, Friday was my other meeting with Dr L. First off was really simple – Yes, she’s willing to do the referral, they just need to take bloods for a variety of hormone levels and things like that. She took a quick mental health history (Mine, and close family), re-checked my relationships with my friends and my family, and asked if I’d ever self-harmed; Not asking to see the results, just asking if I had. I, of course, told her, listed methods, and she didn’t judge me at all – She seemed unsurprised, actually. Best possible response. She also did an assessment of “Sexual characteristics” which I assumed would have been something scientific, but was actually “Breasts are present… One piercing… Armpit hair…” So it felt more like a check of “Are you conforming to gender stereotypes?” than “This is a proxy for your existing hormone levels”. If she was actually looking for something like an intersex condition or PCOS, I’d have assumed she’d want to see things like hair growth on stomach, or unusual presentation of genitalia. So I have no idea what that was all about, but she was pleasant and professional and laughed when I said that there had been two piercings, but the cat took objection to the other one. So no fault there.

I then went to get bloods taken, and was lucky in that the nurse on-duty had a slot free immediately, so straight into the room we went, with two tiny butterfly needles. She’d asked “Good vains or bad veins?” and my response was “Crappy veins. Rolly, collapsy, deep and narrow. Paeiatric needles if possible.”

She’d been pleasant about that, seeing what the smallest needles she had were (21g) and being reasonably inquisitive about why I had awful veins. I was happy to chat about EDS-HM, let her stretch up the skin on my right forearm, offered to let her try bending my fingers back to see what a “boggy” joint felt like, but she declined since she was “Risk averse and didn’t like hurting people”. All so far, so normal, in fact fairly positive.

She listened to me when I told her where the good vein was, and I’d taken off my overshirt (leaving me in a vest) so as not to risk getting blood on my cuffs – Regular readers will know that the “one good vein” is a massive sanguine superhighway on the back of my right hand, which bulges clear of the line of the skin on either side of the anatomical snuffbox when I flex. It’s a beautiful thing to behold, a testament to the combination of good muscle development in my forearms, and to the terrifying paper-thinness of my skin. She punctured near it, managed to miss the vein (even though I could feel the tip of the needle brushing against the side of the vessel, and I was happy to tell her to just pull back by half a millimetre and have a second go) then withdrew, leaving it bleeding and with a bruise rising up. She put a cotton swab over it, held my hand to the desk with her thumb to put pressure on it, and waited for the immediate bleeding to stop to try again.

And then things got awful.

Now, you probably all know that I have extensive self-harm scars. They’re all on my left arm (Not the arm she was meant to be looking at), they’re all fairly obviously healed and they obviously (to anyone who knows what wound healing looks like) range from about six months to decades old. I don’t habitually cover them up, firstly since I dislike wearing long sleeves and I don’t think that I should have to hide any part of my body to make someone else more comfortable, and also because I think it’s probably helpful to youngsters who self-harm to see an older gent who basically has his life all in order, and has obviously also done so. I distinctly remember being a young teenager and despairing of the idea that, by self-harming, I’d be stuck forever in teenagehood, somehow. That I’d always be “emotionally immature” and that I’d be hated and thought of as disgusting or pitiable whenever someone saw my arms. I’m not exactly inviting a conversation, but I’m setting a little radio beacon on the numbers-station of non-verbal-communication, that people can have their histories and that their histories aren’t all they are.

But the nurse breached all possible bounds of good taste. Whilst we were talking about something completely unrelated, with her holding my right hand pretty firmly to the desk, she reached out with her free hand and touched my scars. No asking permission. No “Are they a sensitive subject, or can I ask you about them?” Just straight-off-the-bat touching them. And not a brief poke with a finger to indicate what she was talking about, as she asked “What made you do that?”, no, she actually traced them with her finger. Following the longest lines, exploring the texture on the crosshatching. I was so shocked that I froze, which effectively stopped me from pulling my arm away quickly enough.

By the time I unfroze, probably only a few seconds but it felt like forever, I responded with “Because my life is horrible.” and then quickly tried to divert. I could see that she wasn’t going to stop looking at them, or stop asking about them (Just fill in the silences here with inane and incredibly personal remarks like “Don’t you already have enough pain and problems?” and “I can never understand why people would do that” and “That looks like it must have been so painful”) I diverted onto the mechanical nature of them – Indicating the difference between an atrophic and hypertrophic scar, which ones were hyperpigmented, how the difference between a full-thickness lesion and a partial-thickness lesion affected wound healing basically doing the same lecture on immune function and cell growth that I would have given to a nursing student, but with specific reference to the unusual qualities of EDS-HM skin, and with my arm as Exhibit A, instead of a collection of slides.

It was the best I could do, she wouldn’t stop looking at my arm, and she had my other hand pinned to a table so I couldn’t put my overshirt back on.

Eventually, a whole fucking lifetime later, she tried a second venipuncture, but by now I was so tense and nervous that what should have been an easy stick was impossible. Another hole, another bruise. Come back on Monday, get someone else to try.

I left, feeling utterly fucking violated, and despairing of the training of some nurses. How much special knowlege does it take to not ask someone about something that is so obviously personal? I’d never even dream of asking someone how they got a road rash, even though I know that the answer would probably be “Came off my bike, skidded a bit, was fine”, because there’s always the horrible chance that they were riding pillion and the driver wasn’t so lucky. Fuck, I’d never dream of asking someone how they got so much as a papercut. So how did she think it was all right to ask someone, who was already in a very vulnerable situation, in such graphic detail about something which was an obvious symptom of mental illness – Especially when the person doing the asking was pretty obviously not about to sit around for a three-hour unburdening of the soul about the mental and physical pains which might cause someone to self harm (see: apply topical irritant) for relief.

Unsure whether to write an anonymous note saying “Hey, so, your nurse did this, and it was a bit out of line, and she didn’t mean to be intrusive but it made me really uncomfortable, could you ask her to not do it again to anyone else?” or whether that would trace straight back to me and make me the pariah of the practice.

Also, this is at least part of the reason that I’ve been fighting the urge to self-harm so badly for the last couple of days – If people are going to make free with the healed stuff, maybe actual blood-on-skin might make them think twice about touching, or asking, or generally bothering. I know that it won’t help, but that’s how my brain went about it. It’s been a long couple of weeks.

For the record, I’ve not self harmed.

Herbs

So, yesterday turned into a complete clusterfuck.

After having woken up at 04.30, and dismissed the pain in my abdomen as “period cramps”, things kind of deteriorated.

By 3.30, I was in so much pain that I could barely keep my composure on the phone as I rang the GP to ask for an emergency appointment. I was actually in so much pain that I took a taxi to travel the less-than-a-hundred-yards to the surgery. I was piled into a transport chair at the surgery, and seen immediately by a Dr W, whom I’d never met before, who quickly palpated my stomach, rang an emergency ambulance (“here in ten minutes”) and told them to take me to gynaecology at StJ.

The ambulance arrived, I was shovelled into it, and handed the nozzle of entonox. The pain lessened, and I started being able to explain the problem, doing the standard in-ambulance checks (Blood pressure, heart rate, preexisting conditions), and phoning Best Friend and Dearest to tell them where I’d gone. Then the canister ran out, and I was back in acute abdomen hell. I fully expected the paramedic (A nice Australian who got a good balance between being genuinely worried for me, professionalism, and keeping me calm) to say that an empty canister meant that I’d had enough, but instead he just got up, installed a new can mid-transit, and handed the mask back to me with a cheeerful “Fire in the hole!”

At this point, I inhaled enough that I bascially only regained consciousness upon arriving in Ward 26, who immediately sent me along to Medical Assessment, where I was put in a chair in a waiting room with several other patients and the snooker on the TV. Every now and then the pain broke through to “Uncontrollable” levels, and I curled up and howled for a bit. An incredibly sympathetic nurse (Nurse H) came and took my blood pressure, then eventually took me off to a private consultation room to get my bloods (Checking for systemic infection) and generally confirm what the problem was. She had literally no idea what hypermobility was (“Oh, I just thought it was shorthand for having mobility problems”) so I proceeded to fascinate and horrify her by dropping a shoulder out of the socket and letting her put it back, and we generally had a really nice conversation about basically everything – She’d trained where I used to be a technician, we used to frequent the same bars, she asked the traditional leading question “So, do you live with your girlfriend?”, and was generally very, very friendly. After about three hours in total in Assessment, where I’d had a single dose of morphine for pain relief and nothing more, we said our fond farewells and I was transferred off to Gynaecology, where I should have apparently been in the first place.

I was put in another transport chair, and portered over to Gynaecology, which had moved, so which took a few more detours than I’d expected. At this point, I was texting Dearest as to where I’d gone, and had to update him about five times.

Gynae was a very modern, labyrinthine series of private treatment rooms, one of which I was immediately installed in, my stats taken again by another nurse, and I was left alone. After having read the contents of the instrument drawers a dozen times, and thus gone thoroughly out of my mind with terror and taken a single diazepam to clear my head and loose theĀ  tension from my whole body (Now frankly tortured by the four hours in uncomfortable chairs), lay down on the examination bench, and continued reading (The flight to the Walpurgisnacht ball, Margarita’s remarkably affectionate scene with Woland and his retinue as they prepare for the guests).

(Relatedly, at some point I have to do a cripple’s-eye-view analysis of Woland. His accepting of guests and still being a commanding presence whilst sitting in a mess of old bedlinen, wearing only a badly-darned nightshirt and slippers, and having his rheumatism-slash-witch-related-injury attended to by Hella, is increasingly an inspiration on how to conduct business. It was actually only in that scene where I noticed that he’s always portrayed as sedentary, as leaving everything early, and as not only walking with a stick but actually being lame)

It took a further five hours to see a doctor. I was periodically checked up on by a nurse, who very much fell into the category of “Absolute solidarity with anyone else stuck in this godforsaken buildding so late at night” and was periodically told “You’re next on the list, won’t be long now.” She gave me a dose of morphine, which was no help (I later found out that I’d been prescribed 2.5 mililitres of Oramorphy, or 5mg of actual morphine. Considering that my starting dose is 14, this explains why for much of the rest of the night I alternated between screaming and sobbing, pacing like a caged polar bear, trying to distract myself with my book, and creating gynaecology-specific lyrics to Chris Cafferey’s “Pisses Me Off”.)

At eleven, I went for a leg-stretch around the corridors and saw a sobbing, frightened-looking woman in a hospital bed being wheeled through the department. A few minutes later I was told that the doctor had gone into theatre, and would be a little bit longer. I was mostly just glad that I wasn’t the woman in the bed.

By 12.30, when I was lurking near the break room in the hopes of scavenging a cup of tea, more morphine, or a biscuit (Hadn’t eaten for over twenty-four hours, since having about half a Chinese takeaway on Thursday evening) I saw the same woman being wheeled back, unconscious.

At one, I met the doctor – Impossibly young, impossibly cheerful for someone who had just done abdominal surgery in the middle of the night, and I immediately wished we were friends. She checked over my abdomen again, working out that the pain was all basically in a quadrant between my navel, the top of my left iliac fossa, and the centre-line of my pubic bone. She, again, asked if I was generally fit and well, and I told her about the hypermobility syndrome, to which, instead of getting a blank look, she said “Oh, join the club”, and soon after launched into an anecdote about a shoulder sublux whilst performing a caesarian section, which she cracked back into place without even needing to rescrub, or the patient suffering at all. I was moved to describe this as “badass”, which she agreed with wholeheartedly, and immediately started taking the piss out of rugby players with their “Oh, I dislocated a shoulder on-pitch and my coach just punched it back in and sent me back onto the field” stories. So, of course, I had to tell her about the time I’d been manually examining a cow’s cervix and ended up getting my forearm back, but not my hand.

It was decided that she’d have a look at my cervix, to see if the coil was still in place, take swabs for pelvic inflammatory disease, gonhorrea and chlamydia, treat for them all anyway, and then see what happened next. As such, I stripped below the waist, was handed a speculum (Both her and the attending nurse were surprised, impressed, and thoroughly supportive of me having control of what was going on, since as she put it “It wasn’t in anyone’s best interests to traumatise me so much that I never came back”) and played the feindishly-difficult joystick game of “Where the fuck is Percy’s cervix?”

Cervix eventually found, I got some good news – Nope, there was no plastic sticking through it, so the coil hadn’t slipped down. The bad news was that there were no visible threads anyway, so it could have gone up, and be basically anywhere in my abdomen.

…So, at some point within the next two to six weeks I’ll be having an ultrasound to find out where my coil has gone. If it’s not the thing hiding in my left iliac fossa and causing all the pain, I’ll be amazed.

At 2am, with a letter for my GP, a couple of boxes of antibiotics, and a promise of an ultrasound coming up, I went home. I’d been in the hospital for ten hours, and most of that was the nine-hour wait to see a doctor. That’s pretty amazing, considering that the GP who originally phoned me in said that I needed to be seen immediately.