Rheumy

Woke up bright and early at 8am* as I had an appointment with new Rheumy at 10 and there was no way in hell I was missing this one.

In keeping with the no way in hell I'm missing this one plan, we arranged hospital transport weeks in advance, as we had the last three times, but we'd also called up every single day for the past week just to make extra extra certain. They probably got quite annoyed with us, but missing appointments has been driving us crazy. Seriously batshit crazy.

Dressed and ready to go by half 8. Wheelchair bag packed with snacks and books and laptops etc in case we have to wait around for hours - we may not have done a Rheumy appointment before but I've had appointments with specialists in hospitals. I know damn well that I need to bring a book.

Start to get worried about transport again at 9. Call up. Again. They insist that the transport is on its way to us. Okay.

Getting bored of waiting. Go to check the mail, see if there's anything interesting. Doubt there will be. Oh wait, what's this? A note from the hospital's ambulance service. Remarkably similar to the Royal Mail 'you weren't in' card. With a ticked box saying I refused transport at 8:41am this morning.

I'm very confused by this. I certainly did not refuse any transport. I assume they mean I didn't answer the door. But in order to answer the door, they have to make some sort of noise to let me know they're here. I've been sat waiting and ready to go since half 8. In the living room. Mere feet from the door. It's half 8 in the morning, there's no noise going on that could possibly cover the sound of the door knocking. The doorbell's broken, but has a piece of paper taped over it to point this out to people.

Obviously, ringing doorbells through taped bits of paper and not knocking at all is the best way to go about things. I'm not that surprised; Royal Mail seem to think along the same lines**.

Fortunately, in the spirit of 'I AM NOT FUCKING MISSING THIS ONE' we are prepared for this eventuality and have money and the number of a taxi close at hand and ready to go. We can't exactly afford a taxi but fuck it, someone can miss out on a Christmas present for the sake of me not fucking missing this one.

Taxi gets us there with ten minutes to spare - despite the icy snow-covered roads that nobody in England is either prepared for or capable of dealing with***.

Finally at a hospital on time for an appointment with a Rheumatologist. Fucks yeah! Head to reception, check in, she starts going over things and asking me questions (GP's name, next of kin, ethnicity, religion, confirm my address etc etc) that were on the form I just handed her. The form that was sent with my appointment letter which stated very clearly in big bold letters that I absolutely MUST fill it in. Which I did, painstakingly (I don't think I've ever seen that word used quite so literally before). Little upset that I hurt my wrist so badly for no reason but oh well.

Wait around for an hour before my appointment. That's alright, we came prepared. I have a book and a bag of crisps and we have change to get hot chocolate with. Yay hot chocolate! Rambo gets a newspaper too, as he forgot to bring a book. He gets so engrossed in this paper that when my Rheumatologist comes and calls my name he doesn't hear it. I do. I wave at the doctor, and try to get Rambo's attention so that he can wheel me over, because we came in the wheelchair today to minimise my breakage and my wrists are too screwed up already this morning for me to even attempt pushing it myself. Eventually get his attention, but am very embarrassed by this point because he's waiting for me and I can't move to go to my own appointment! Oh dear.

Rheumatologist (totally needs a blog name, by the way. I'm thinking Snowdon. It is the tallest mountain in Wales. That has nothing to do with how he got the name. In case you were wondering.) tells me he doesn't really have any of my files or history, just a little note from my GP stating 'probably has Ehlers-Danlos'. Great. That's fine. I'm prepared for ANYTHING today. I'm like a fucking boy scout. I pull out my laptop, open up the symptom log I've been writing in for a while that just happens to have a list of my family medical history and all my medications and previous diagnoses. Snowdon is all 'wow this is super helpful' (except not as sarcastically as that comes across in writing) and sits there reading for a bit. And then asks me to email it him and gives me his address. I do it as soon as I get home, because there's no wifi at the hospital. But anyway, back to appointment. He reads all my symptoms and history and meds and goes 'It's pretty damn clear that you have hypermobility problems. And you seem to know that anyway.' and asks me to come into the other room for examinationess (so not the word he used. I forget what exact words were used.)

In the other room, he asks me to show off my hypermobility. I quickly run through the beighton scale, getting an 8/9 as always, and explaining that my sister can't do the 9th of touching the floor either. Apparently it's because she has short hamstrings. I'm fairly certain that's the reason I can't either as it hurts my hamstrings like hell to try. He then asks me to show off my other hypermobile joints. I look at him confusedly. He rephrases and tells me to show off bendy party tricks. Aha. Now I know what to do. I do the weird twisty finger things. I stand with one foot facing forward and one facing backwards. He asks about shoulders and ankles. I've never done party tricks with these. I just start twisting in random ways, arms up behind my back to bend my shoulders, wondering whether this is actually past normal range or not. He laughs and tells me I'm most definitely hypermobile in all my joints and I can stop it now. Then he pokes at my fibro tender points a bit. Fucking OW, dude. Seriously. Tender points are TENDER.

Then we go back and sit down and we talk about my diagnosis and treatment etc and he starts trying to tell me that there's a thin line between Joint Hypermobility Syndrome and Ehlers Danlos Syndrome and no genetic test for either but he thinks I fall on the Joint Hypermobility side rather than the EDS side. I try to explain that specialists have been arguing that these two are one and the same for years and it was actually officially decided earlier this year at the HMSA conference that they are in the fact the same diagnosis. He ignores me and carries on faffing over which one, then contradicts himself by saying that it doesn't really matter anyway as treatment is pretty much the same for both. THEN tells me that just in case it is Ehlers-Danlos (ORLY?!) we need to check for vascular symptoms. Books me an echocardiogram. And some blood tests, just as a 'background check'. I dunno what that means. All it brings to mind is background anti-virus scans. I am not a computer. I do not need background checks. But whatever. My GP and I go through this twice a year just to check I've not gone and developed Hypothyroidism while she wasn't looking anyway. I'm not afraid of blood tests. Just slightly annoyed by them because, being an EDSer (with an actual diagnosis now!), it's damnably hard to take blood from me.

Bad side-track. He was booking me for tests and discussing diagnosis. Right. He also talked about secondary diagnoses and started explaining that they were all caused by the EDS and the pain, even the mental problems, and I'm just staring at him blankly because...DUH. That's what secondary fucking MEANS. But let's carry on with the pretending I know nothing, because all doctors like to think that, and it's just easier to not rock the boat. I kind of want to chase a POTS diagnosis so that I can get some pills to attempt to control it, but as soon as I mention my Postural Hypotension diagnosis**** he again starts telling me that this is just something that naturally occurs in patients who have muscle and joint problems and therefore aren't very active. All very well, I say, but I've had these problems since I was a little kid and was much more active at the time. Plus, you know, there are medications I can take that will help this! He ignores me.

We start talking about pain management. I ask about a pain clinic. He explains that there are two kinds - the kind that throw drugs at the problem, and the kind that try to help you manage your pain. There aren't very many of the latter, so he doesn't want to refer me to one. He doesn't like the idea of throwing drugs at me. Neither do I, really, as drugs don't seem to help. But I don't particularly like writing off the whole idea of pain clinics just like that. Plus, maybe there ARE some drugs that will help me. I know a lot of bendies with painkillers that actually work, they just had to try five million different kinds before they found those. I can do that! I don't mind! But the only drug he will discuss is Amitryptiline, which I've tried and it a) didn't help at all and b) had terrible fucking side effects. He insists that the side effects will wear off eventually and I should try it. I tried it for a month. I cannot stand those side effects. And even if they do wear off eventually, what the fuck is the point when their MAIN effect doesn't work? Whatever. I explain that my sister had the same problems as me on Amitryptiline but was moved onto Nortryptiline and seems to be finding that one a lot better. He says 'ok, we'll try you on that' but doesn't actually write me a 'scrip for it.

Then he tells me I'll get appointment details for an echocardiogram through the mail. As well as the results of the blood test, and sends me on my way. Okay. Fair enough. I'm not sure I can take any more pandering to doctors today anyway.

Go see the nurse instead to get blood taken. I warn her I'm going to be very awkward to take blood from and she's going to need to use a small needle. She laughs and thinks I'm exaggerating. Haha. No. Takes her fifteen minutes to find a vein with us joking about my lack of them the whole while. She does get the blood first time though when she eventually finds it. Good on her. Last time I tried to get blood taken at a hospital it took four hours of three nurses and one doctor poking blindly into both my arms and both my hands before they eventually gave up and sent me back to my GP. Who got it first try. Now I have two nurses I trust to take my blood. :)

Anyway, she does manage to take FOUR VIALS of blood. Which takes a long time, because even if you manage to find a vein my body just starts laughing at you when you try to take more than two vials. The blood's literally spluttering out of my vein with its laughter. I'm sorry if that image was gruesome. But that's what it looked like.

Then we go home. And I'm broken all over by now from all the poking and prodding and showing off and the low blood sugar/pressure. And I need food and I can't make food because I'm not so good with the standing up and Rambo has to go back to work. And I try to write but my wrists are too broken. And it's now seven hours after I got home and I'm just about finishing. In a rambling rush that makes no sense because I just want to be DONE so I can hit post and go rest. You probably recognise this from the few other long posts I've done - they peter out into nonsense and blah blah blahs by the end.

Oh, and then just now the postman delivered a big huge box from Waterstones and even though they're meant to be Christmas presents I can't help grinning with glee at the huge pile of books next to me. It's amazing how much better a pile of books makes me feel. Especially as I'm not really allowed to read them. That's just odd.






*I say bright and early, but it wasn't really. That is a very sort of chirpy happy phrase that implies I was awake awake. I was not. There was much stumbling, fumbling, bumbling and confusion.

**Much hatred to Royal Mail over that fiasco. Had a parcel sent via next day delivery on the Monday. Waited in all day Tuesday for it. A few feet from the door, taped-over doorbell, no noise. No card, no nothing. Waited in all day Wednesday for it. A few feet from the door, taped-over doorbell, no noise. 'You were out' card. NO I BLOODY WELL WAS NOT OUT. Arrange a redelivery for the Friday. Wait around all day on Friday. A few feet from the door, taped-over doorbell, no noise. No nothing, no card. Wait around all day Monday. A few feet from the door, taped-over doorbell, no noise. 'You were out' card. Dated for SUNDAY with a 'please collect' written in the notes section. Try to call someone about it. All the 'customer service' lines have robotic menus and nothing else. Menus basically allow for you to arrange a redelivery and nothing else. Eventually send Rambo down to post office to collect. Nearest post office being a bus ride and £4 away. I had 3 other Royal Mail deliveries during this time and no problem with any of them. Why did they hate on that one parcel so much? :|

***Seriously. We have about a third of a foot of snow at the minute. That is NOTHING. Any other country would be laughing at us if they realised just how little snow it takes to make the entirety of England BREAK DOWN. The British do not understand snow!

****Yes, I actually have that diagnosis already. Just fairly certain that in itself is a symptoms of the POTS but the doctor who diagnosed me with it didn't check for that. Or tell me anything about it. Or offer me any pills or management options. Just said 'This is what you have. You are going to faint when your body temperature's slightly above normal and you have the audacity to try and stand upright. Deal with it, bitch'. Except not in those words, obviously.