France: The Nanobots are coming!
Let’s kick off with a political allegory….
Once upon a time there was a group of antibodies. Just like all the other antibodies they were there to protect the body and stop nasty outside attacks from causing harm. For a long time this worked perfectly well, and all the antibodies worked together for the common good.
But one day this smaller group of antibodies convinced themselves that bits of the body that were not threats at all, and were actually essential to the body functioning well, were actually a terrible invasion that needed to be stamped out.
The group decided to dress up a certain way so they could be recognised as a whole (but not individually) and began turning up in parts of the body to disrupt and threaten its benign parts to the extent that the whole body started to suffer.
The sensible thing to do would have been to deal with this group of antibodies immediately to stop the harm they were causing. After all, it is easy to spot them thanks to their outfits. But some people thought they were expressing ‘legitimate concerns’ and that you couldn’t be sure that the parts of the body they were targeting weren’t actually a threat after all.
Thus, the body continued to suffer and deteriorate. What a sorry and painful tale.
Well, we’re not playing that way in THIS body. The Nanobots are coming to sort out the problem! Read on….
Outpatient appointments
Of course, the above tale is a lead-in to the news that my super-duper drugs have now been prescribed.
It was a bit of a circuitous route getting to this point. The initial outpatient appointment I had on 11 September was very focused on playing it safe; my MRI tests hadn’t confirmed the initial diagnosis (which I found very depressing) so they couldn’t be 100% certain that the preferred treatment was the right one.
As explained (really nicely) at the time, rheumatology is a science, but one where it is helpful to put conditions in ‘boxes’ for ease of diagnosis and treatment. However, life is rarely as convenient as this, with people spanning 2 or 3 of these ‘boxes’. Such is the case for me. So the solution was to go in with a safer, broader and less effective drug - the ‘Volkswagen’ option which is cheaper, does the job but isn’t that great really and takes a while to work.
A useful intervention
So off I was sent with a (very cheap) prescription to start taking, with a view to reviewing after 3 months. I broadcast the news to the family network, excited about a potential step-up in treatment, and then had a reply from my brilliant daughter that she’d discovered potential interactions with other drugs I take on doing some research. I passed this info on to the hospital and held off starting the Volkswagen drug.
Now back in the UK such an interaction would probably have been dismissed or ignored, but to their credit the hospital owned up to the mistake of not checking this aspect prior to prescription, and then started their own research to check it out. The outcome was I was called back in for another appointment and discussion.
At this appointment my doctor said that there was a risk of the Volkswagen drug impacting on the efficacy of my epilepsy medication, and so the team had collectively decided that they’d put me on the ‘Lamborghini’ drugs instead! As Dr Spielmann put it these are the best available, and because they have been on the market more than 10 years the costs have reduced from the €1,000+ we’d been told to expect to more around €330.
This drug searches through the (real) antibodies in my body looking for any with a certain marker, and then essentially gets them to stop attacking my joints and muscles. Hopefully you can now see the point of my intro story.
Now listen, I’ve watched my share of Star Trek so I know that cleverness on this scale has to be more of a technological solution than a medical one, so I’ve convinced myself that each monthly injection is pushing in a fresh batch of Nanobots to do the work. So that is what I’m calling them.
They are currently sat in my fridge (Nanobots like the cold) until I can arrange for a nurse visit to instruct me how to inject these, and s/he will be on hand the next 2 times while I try it out myself.
So we are very excited, after months of discomfort and me wasting away (looks like I lost 7kg in weight)
Insurance claim denied
An unfortunate backdrop to this exciting development has been our health insurance providers confirming by email (and then by phone) that they are not going to meet ANY of the medical costs we’ve incurred since we’ve been in France.
This has undoubtedly been a huge blow; none of costs of the drugs so far, my hospital stay or the tests I’ve had will be picked up, and we will have to foot the bill. Let that sink in for a minute…
We are, of course, planning to appeal, and the lovely Dr Spielmann has been discussing some UK medical records I let him have with colleagues. In their view, there is a distinct delineation between the pain and its diagnosis in the UK (being mechanical/structural in nature) and what was observed in France when getting medical support. So they are going to write up a report to state that for us to use in our appeal.
If I’m honest I don’t see this winning the argument, and I’ll still likely need to raid my untouched private pension to meet the hospital costs.
Given the cost of the new treatment, Rachel is getting us prepped for our applications to join the French healthcare system. We’ve already had a quick face-to-face with the healthcare offices to ensure we have all the necessary documentation in hand so we can apply on the first possible day.
Events
Being more mobile lately has meant I’ve been more able to ‘do’ stuff, so we’ve been trying to get out and see more of this lovely area we’ve moved to.
Colmar - Journée des associations
This was a great excuse to drop into Colmar at the lovely Parc du Champ de Mars for the annual exposition of all the local clubs and societies in the area. Something like 120 of them were there covering a wide range of activities and interests, and it was a really nice, relaxing way to take it all in.
We were particularly keen on l’AVF Colmar which is set up with a mission to welcome newcomers to the area and help them develop social ties. They have a nice looking set of activities so we’ve signed up to them.
Munster - Fête de la Transhumance
Munster is home to one of the tastiest (and stinkiest) cheeses in Alsace, so I wasn’t sure what we’d encounter at this event.
Being a small town I hadn’t expected it to be so packed with people (and cows) for something celebrating the Vosgienne cow and its journey down from summer pastures ready for winter. The streets were lined with people waiting the parade, which was great fun with locals in costumes, not to mention the cows themselves who had been given headdresses and huge bells around their necks (they didn’t seem happy about this)
First visitor
Prior to moving here we’d invited anyone we know to drop in and visit, safe in the knowledge that with 2 bedrooms we could put them up comfortably. Unfortunately, my current condition means I’m using one of those rooms so Rachel can at least get some sleep as I’m up 6 or 7 times in the night.
One of our booked visits was from my old school friend Tim, as part of his annual pilgrimage back from Sydney where he lives to the UK, taking in everyone he knows in the process.
Not only did we have to change his stay to being a brief one-day visit, he’d also got the dates wrong on it coinciding with the Turckheim Hill Climb! So we had to compensate with a drive of the course and a decent lunch.
Still, the event looks like a cracker, so I must try and go next year!
House sale
Well, the house is back on the market, and our fingers tightly crossed.
I have to say that Domus did a fabulous job playing with the photos of our empty house by using a bit of AI magic.
We have a viewing this Saturday so we’ll see what comes of that. At least we’re moving forward again on this.