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September 2024

I also had a totally horrifying hospital fiasco. I realised I only have 2 weeks left of a crucial medication for my rheumatoid arthritis. I phoned to see why it hasn't been delivered and they told me they hadn't called because the hospital hadn't renewed my prescription.

Without this drug, I am SO ill. I can't walk, use my hands. I was vomiting just from the pain of lying still. I ended up hospitalised with it.

The first person I spoke to at the hospital told me it takes 8 weeks to renew. I can't tell you how panicked this made me.

Fortunately, I think they are going to sort it and that estimate was wrong... But nobody told me the prescription had an end date! And the delivery company only told me because I phoned them... This all seems quite negligent when you have a lifelong condition and rely on meds.

I spent most of today working through a textbook on statistics. I feel it's always been my weak point but now want to properly nail it as my role is getting more involved in data projects.

The other really pleasing thing about the JCLS and JLSC articles is that, by chance, both publishers use Janeway, the scholarly publishing platform that I co-founded and initially wrote with @ajrbyers

Amusingly, the two journal articles I have published this year appear in JLSC and JCLS (Journal of Librarianship and Scholarly Communication / Journal of Computational Literary Studies).

They frame it as though people with serious long-term conditions are just "nervous"/"anxious" about re-entering work, when, in fact, they are just too unwell to do so.

I'm just about finishing Brian Lennon's Programming Language Cultures and have really enjoyed it; smart philology of various languages, although I remain less sure about the "automating automation" part of the book's theory.

Thank heavens for the on-call out-of-hours renal technicians. Had a pump problem tonight which they managed to resolve on the phone. It's a bit more involved than turn it off and on again!

Wanted to tune in to the diamond OA event, but got a blood leak detected on the dialysis machine and had to phone the emergency on-call technician. Now beyond my safe dialysis period and may be in for an emergency hospital trip tomorrow 😭

These spam article solicitations are getting more assertive by the minute.

"So, I ask you to submit your article if you have it promptly or something bad might happen"

Almost at the hospital for my fistulagram this morning. This is where they inject dye into the arm to ascertain if there are branches or narrowings that affect the pressure.

Today I learned, from a Bluesky post, that in 1991, Tim Berners-Lee's conference paper on the World Wide Web was deemed insignificant and relegated to a poster session

Unless we want to see "bigger class sizes, less lectures, less nice buildings to teach in and less equipment for the practical subjects, then there has to be some more money", Prof Day says.

Can these people hear themselves? "less nice buildings" https://www.bbc.co.uk/news/articles/czxdd7qglp6o

Beside the grammatical horribleness, they seem not to have noticed that the government is plunging a load of pensioners into freezing poverty to save money. Whether some middle class people get taught in "nice" buildings at uni registers as a "zero" on the give-a-damn scale.

Rollercoaster. Succeeded in needling then bled so long that we can't now use the needling site we've worked on for 6 weeks. We have to start again after surgery. But then my nurse phoned me and said that I can start dialysing overnight using the central line. 25hrs per week back!

Disaster at the end of the session today. Took an hour to stop bleeding. Needed vascular access nurse.

Now I need a fistulagram and we have to start again with the buttonhole. Another at least 2 months of hospital twice per week. And surgery to correct the fistula before that.

So much of kidney failure/dialysis is feeling like you've been kicked/beaten and having to pick yourself up again. Well, I felt terribly demoralised and bruised after the failed needling on Tuesday. Can't say my confidence isn't dented but I'm back at hospital today to try again.

Awful hospital session today. We've spent 45 minutes painfully trying to get a needle into the fistula/my arm, with no success. Now I will go home and have to dialyse on the line in my chest tonight, instead. A massive and depressing setback.

Pushing myself on walks now and doing the best I have since my hip replacement - 3.5km of coastal walking today. And a seaside ice cream.

May not seem much, but this time last year I couldn't get anywhere without a stick or a wheelchair.

A mixed bag in hospital. We discussed transplant, but consultant didn't want to get my hopes up - I need to clear BK virus and there's no guarantee it won't return with anti-rejection meds. Meanwhile, I'm close to going to overnight dialysis and getting 25hrs per week back.

Doing overnight dialysis 5 days per week, 8 hours per session has the same health benefits as a cadaver donor transplant. The problem remains mobility - you still can't really travel freely with ease.

Major success yesterday at hospital - I managed to put both of my own dialysis needles in my own arms, unassisted. A huge psychological step forward and moving me closer to doing it at home again, taking the central line out of my chest, and going to overnight treatment.