mostly of kj: joints, water, and ink

Dear all –

Greg has asked if I would post an update on my own health. I’m gonna cut-and-paste some bits and pieces from e-mails, etc., so forgive the ‘bitty’ nature! It’ll also be longer as a result – but there are more important things for me to be editing just now!
My favourite thing to do each day is walk about the garden, taking in the spring glory. I’ll include a few photos below, and try to do a proper “Pré Borel” blog soon.
[arrgh! I've had my usual posting probs: so the photos are all in a row, and for some reason they've all come up undersaturated -- washed out. Oh well. You'll still be able to see the pond on Easter morning (our first snow of the season), then a week later with Greg and one of his godsons (frog-spotting), and then a couple of weeks ago (unmown)...there are are also shots of garden occupants (flora & fauna)...and our newest neighbour, who is also Greg's new best pal...(more photos of them, and the jealous cat, later!)]

***
As of April I hadn’t been so great for most of the year so far, really. A fair bit of pain, in hand/wrist/ankle especially, & as a result not sleeping much. Since Feb my right wrist/hand has been particularly bad -- sometimes I can't even pull the lid off of a pen, let alone hold my coffee mug. Often the wrist kind of 'cuts out', and whatever I'm holding drops (dangerous when one has tile floors!) And obviously typing/writing's not easy. By April I'd more than doubled the pain meds, and had to go on a few steroid 'pulses' -- which hadn’t resulted in much other than fuzzing my head and making me gain weight.
Pretty frustrating for us both.

Greg rang my specialist, and asked if I could have another steroidal infiltration soon (the x-ray guided thing I had before – a little over a year ago for my wrist, and also later on my ankle, elbow. The diff afterwards was incredible). When my doctor heard that I was that poorly, he scheduled me for an 'emergency check-up' (usually appts need to be made at least a month in advance, and I wasn't schedule to see him until the end of May).

At the check-up he concurred that I needed another infiltration surgery in the short-term -- but he was more blunt than ever before that this was no longer a feasible continuum. Not for my right wrist, anyway. My bloods results since Christmas had been a little worse than before,
but not a lot. Overall, the Enbrel is still doing a really good job: the majority of my pain/exhaustion is coming from permanent and irreversible damage commenced before I was put on the anti-TNFs (basically, before I moved to France). As the effects of each infusion wears off, the pain, inflammation, etc returns and the damage continues. My right wrist is sufficiently damaged that the infusions have a very short term benefit. (In addition, because the bones are
jammed together, with no more cartilage, it's an increasingly difficult procedure.)

My doctor wants me to have my wrist fused as soon as I can bring myself to it. Wrist replacements aren't really an option for someone as young as I am, as they still only last a few years. Having surgery doesn’t phase me: I’m an old hand. I explained to him that the main thing that was causing me to wait was that I really didn't want to give up my style of handwriting -- silly as it may seem, I love the physical act of writing, thinking through it, and, writing in a way that makes words lovely to see. I know that already my ability with this has diminished, and often my hands are just too tired or sore to 'write nice.' But I'm loathe to give up my wrist motion altogether. He then said, "Kirstin, look at my wrist: see how much it bends? Now, look at yours: it's practically fused already. The biggest difference from my perspective is that you won't have pain in it any more." He's right of course.

Soon we will have a meeting with a surgeon to discuss just how long my hand is likely to be out of commission.

But the treatment I did receive immediately was a “cure”.

Apparently I've qualified for a "cure" before this year, but everyone assumed that we already knew that. We didn't, or trust me, I'd have already had one! The "cure" is a big part of French medicinal history (and costs the gov't waaay too much...but I'm happy to be a beneficiary just now). People go on 3 week "cures" at thermal spas all over France...for rheumatism, respiratory problems, skin diseases, etc. This is a far cry from the leisure world of the North American or even British spa (I guess the old fashioned word 'sanitorium' would be more apt), but sanus per aquam [health through water] was what it was all about.

The 'thermale' was a fascinating place. Someday, I’m sure, I will write many short stories inspired by my time there – both the people and the buildings!! Although the outside of the part which houses the pools has been redone in a modern style, everything else is pretty much unchanged in the last 100 years or so -- if not longer. It's not like one would expect in North America, with lovely music, relaxing chairs, good smells: it's all pretty spartan, and while there *is* a tank of drinking water free for public use, one has to bring one's own cup. There's no music or decor, and all one smells is sulphur -- the first day or two that is...then you stop noticing it! (These particular waters are boasted to be the most sulphurous in all Europe) It's very much a medical institute, not a leisure one (and no one looked… elegant… as we all sported the required bathing caps!)

There were two or three other people under 65, but that was it. One lady was well into her 90's. Everyone had some sort of degenerative disease, but most were in pretty good spirits. It was a really interesting contrast actually: the first day, because of when mydoctor's appt was, I had an evening session. Usually the evening sessions are attended by people who are paying to have the "cure", rather than ones who have been prescribed it by their doctor. Thus, they are usually people without any serious medical problems -- just folk who are seeking the overall benefits, and perhaps viewing it as a preventative measure. Granted, I am only judging by one evening, but I found this group to be cranky, bossy, and a bit know-it-all on the 'thermale culture'. What a contrast the next morning, when I joined my group of arthritic, rheumatic, osteo-challenged compatriots! They were gracious, funny, welcoming, and keen to help out a newbie (some have
been doing a annual cure for up to 15yrs) -- even if that newbie's French was limited! Indeed it seemed to delight them to no end to all chime out together, whenever someone realized that it was my turn for the next treatment, “Ma-Dammm John-SONNE!!!” I think it cracked up the treatment team as much as it did me! (btw, I still find it strange to be called “madame” by someone twice my age!) Really, the “curistes” (as we were called) were hilarious and lovely folk – we chatted about gardens, micro-climates, how best to wage war on slugs, and the Québecois accent – nearly every day. ;)

(it’s a good thing the small Alpine town was close enough to home (about an hour and a half) for Greg to visit a few times: I had so many stories to share!


The team of people giving the treatments was always lovely. Every day my 'regiment' included: having my joints covered in very sulfurous mud, and then so left while I lay and snoozed; then, soaking for some time in a bubbling tub of the sulfurous water; then either having a massage from a physiotherapist on my back and bad joints while simultaneously being sprayed from above by sulfurous water, or, doing some joint-oriented exercises in the sulfurous pool (these alternated back and forth each day); and then finally, standing in another sulfurous pool, being sprayed from above with a jet of water, and from the side, underneath the water, by several other jets (kinda like an underwater massage). It should come as no surprise that one quickly starts to stink of sulphur oneself! (especially as these are said to be the thermal waters containing the highest concentration of sulphur in all of Europe.) Then, I would go to my room and sleep. This latter, while actually being a strict part of the treatment, hardly need have been 'prescribed': it's astonishing how exhausted one is after a morning of doing practically nothing!
(apparently the sulphur is to account for a large part of the fatigue).

The first week I basically was asleep (or at meals) when I wasn't in treatment -- a little frustrating as I had hoped to launch right into thesis work. After that I usually had a few hours of alertness during the day...so, while I did not get near as much as I had hoped done, I
did get a good chunk into the chapter. At my final check-up the rheumatologist there was really pleased with how much my general inflammation had gone down, and with how much less tired I looked and acted. My left hand looks completely normal now! My left ankle is still a wee bit painful, but not near as bad. My right hand is certainly less inflamed than it was, but, it's still not great. However, it is no longer waking me constantly through the night (that stopped
after a week of treatment) -- which makes a big difference to everything. The doctor did bluntly concurred with my rheumatologist in Grenoble: there's really little sense in waiting any longer to have the wrist fused. The 'filtration' operation I (just) had on the 15th will help, but it's at a point now that even steroids can’t completely mask the pain, and – as pointed out to me -- it's pretty much a straight rod already.

Even now, I find it very difficult to eat with my right hand -- pain and weakness aside, I just can't tilt/twist my wrist enough to get my food to my mouth -- not without my elbow reaching half-way across the table! (The fusion obviously won't help *that*, I'm just going to have
to learn to be left-handed -- or, wristed -- in some things…and start eating like a Brit ;) ). So hopefully I can think clearly enough despite meds and fatigue, and, my body will work well enough, to get a lot of writing done in the next few months, so that the surgery needn't be put off much longer.

The old-hand “curists” claim that in a few weeks my energy should soar – just this week, it does seem to be a little on the upswing, so we’ll see what happens. And I’m not on as many pain meds as before I went away, so I *think* my brain’s a wee bit sharper (maybe Greg’s a better judge of that!) so…onward and upward! Greg does say he’s glad to have me back (!), and that I'm laughing much more than before I left. I'm certainly sleeping better -- which means that he does too. We’re both feeling a bit swamped with life and work and the moment, but also LOVING the beauty of green and spring.

So, now you all know more than you wanted to about kj’s RA, but it’ll save Greg from giving the run-thru each time someone asks!!
Next time, more about Pré Borel!
Je promets.

(as regards writing, I've also been asked to post links to some of my latest work...not quite sure how to do that really, but one can check the ubiquitous Amazon.com for "Tree of Tales: Theology & Literature of Tolkien" edited by Hart & Khovacs, or "George MacDonald: Literary Heritage & Heirs" edited by McGillis. The first has chapters by familiar names: Hart (x2!), Loren Wilkinson, Colin Duriez, Ralph Wood, one David L Jeffrey, and someone related to him. I think the collection's quite fun -- and it's had good reviews -- though I had to struggle with my own pride over some of the publisher's changes to my chapter -- not the least the title! [should be, "Branches on the Tree of Tales: Tolkien and Mythopoesis" ] -- but struggles with pride are good things, no? And it has a brilliant cover. The MacDonald collection is pretty specialist/academic, but includes work of two of my favourite MacDonald compatriots, Gisela Kreglinger and Bob Trexler). This is the link to the audio MacDonald lectures by Kerry Dearborn and myself: http://www.regentaudio.com/george_macdonald_conference. 

And for serious MacDonald-ites, there's a whole journal here with good stuff -- plus a few scratchings by yours truly: http://www.ctlibrary.com/ch/2005/issue86/ 

MacDonald scholarship seems to be generally on the up-and-up: I know a ton of new folk writing good stuff in NA, the UK, and Germany. So be prepared to hear more of the man!)

kj

..