Back Again
Dear All –
We have been quite delinquent in writing!
Part of it is the challenge of keeping up with Greg, now that he is so mobile ;)
Part of it is the fullness of life that comes with more mobility.
We loved having my brother here, although Greg was not near the invalid we expected him to be when Bruce’s trip was first planned! Bruce served more as attendant, cohort and intensive-labour-entertainment than nursemaid. All things good and necessary for Greg’s well-being though, as I’m sure you’ve ascertained (and that last service meant that Bruce slaved away doing things like hours and hours of digging a pond for Greg – while Greg handled the task of planning and observation – this job in particular deserves a photo at some point, so that the task receives due accolade...Bruce's, that is, not Greg's!) And as it took me quite a few days to get back on my feet again after that bout with the flu, it was very good timing to have Bruce aiding and abetting.
This week has been an endless stream of doctor appointments in Grenoble (for both G & K) – tiring for both of us, but at this point actually taxing me more than Greg. (The last few days I’ve actually not been well at all – a combination of factors, including our not realizing that the cornbread I’ve been indulging in all week was actually quite full of wheat – NOT wheat-free, as we had thought). We are very ready for a few quiet days here at Pré Borel.
Correction: I am ready for a few quiet days at Pré Borel. Greg is ready for a bit of quiet time here…. but also for his ESRF work to begin!!
A few gracious folk from Greg’s work have been assisting in keeping the work-part of his brain from atrophying, but even this is no longer sufficiently satisfying for him. And today he got what he wanted: permission from the brain surgeon to, as he is able, start back into work again. The conditional clause is what will present the challenge for Greg, in figuring out how it works. When is "able"? Doing some work from home is a good start, when someone can come out here and dialogue and work with Greg. But our internet connection is quite slow (often important for the work), and it is obviously not easy or practical for others to be coming here often. Nor would Greg be content with that. And he certainly wouldn’t be content working on his own here. What he thrives on is interaction and engagement with others, the sparring of ideas, the synergy of working in community. That much of his work at the ESRF depends on this is part of why he loves working there so much. So we are trying to decide how it is wisest for him to begin slowly, in short and manageable stints, to begin back there again. How to do so in a manner that makes best use of Greg’s time and energy, even when he is feeling indefatigable – for he is not!
It is here that yours truly actually has a little bit of expertise to draw upon, having learned through trial, error, pig-headedness and the realist rod of experience, just what sort of things unexpectedly draw masses of energy from those whose bodies are not quite up to the same speed as their brains. So hopefully we can teamwork some wise strategies. Today a wise visitor gave Greg some firm and caring directive to this accord – and I think she had enough authority and enough respect from Greg that he will at least try to comply!
Greg’s medical appointments this week did not really provide us with any new revelations. The right side of his face (inside and out…ie, tongue, etc) is still 100% paralysed. So we have to wait. And wait and wait, and hope and pray. But also, as the physio/kiné keeps reminding Greg, learn to work well with the face as it is, being realistic that things might not change. It will be a long time the surgeon said, before we get to the point of discussing alternative surgeries, for they want to wait to see if there is any nerve regeneration at all. And, as said before, that may take many months. Even, he said today, a year.
Greg did not see the ENT/ORL surgeon who also operated on him, because that poor man has just had surgery himself. You may remember that he was having serious problems with a nerve in his leg, exacerbated by the length of Greg’s operation – when he first came to visit Greg in the hospital he was in quite a bit of pain. Well, apparently that situation got worse, and he had to have surgery on it! Oh dear. The ENT/ORL nurses were pleased to see Greg though – and impressed by how well he looks, and that his morale was so good.
And before I go to bed, a short note on me. I’ve been on the “New Drug” for 5 weeks now. Not much of a change overall, except that, with the exception of the last 3 nights, I’ve been sleeping through the nights, not waking due to pain, for more than two weeks now. And that’s Great. Having continuous nights of uninterrupted sleep is something I have not had for seven years. It is still early days, so we will keep waiting and watching for further effects. One wonderful thing is that as of yet I have had no obvious side-effects – not even rashes at the site of injection, a side-effect that is apparently quite common. The doctor was pleasantly surprised. Our ‘visiting nurse’ has been teaching Greg how to give me the shots, as some weeks I will not be able to do it myself (the injection site rotates between 5 different locations, two of which are near my shoulders), and yesterday was the last lesson. From now on we are on our own!
(We will miss seeing our nurse so frequently!)
When we saw the rheumatologist on Monday there was one item of particular concern – blood tests show that my liver is not doing so great at the moment. He’s keeping an eye on this, but as a result has also lowered the dose of a couple of my medications…and put me back on daily steroids. Even though the steroid dose is low, this was a bit of a disappointment for me, as I have only just got back to the weight I was almost four years ago now, when I was first put on daily steroids and had to start dealing with the resulting weight gain. Hopefully results from the New Drug will kick into effect soon enough that I won’t have to be on the steroids for long – but as the doctor reminded us, a bit of extra weight is worth the cost. (I just get a bit tired of costs sometimes!)
That’ll be all for tonight, but I will try to be more regular. There is hope, for just a few hours ago a new desk was put into place for me, and I now can unpack all my thesis work (I’ve been having nagging dreams – I’ll be relieved to get back at it!), and in general have much better access and space in which to work and communicate. This also means, I hope, that I will start replying to e-mails. Please know, all you dear communicators, that I have not e-responded to ANY of your wonderful words of encouragement, or queries of concern, or even requests for information or work. You have been equally treated poorly. Hopefully beginning tomorrow, both you and Mr George MacDonald will begin to receive better treatment – but I beg for grace for time, as I slowly work through the list!
with love,
Kirstin
We have been quite delinquent in writing!
Part of it is the challenge of keeping up with Greg, now that he is so mobile ;)
Part of it is the fullness of life that comes with more mobility.
We loved having my brother here, although Greg was not near the invalid we expected him to be when Bruce’s trip was first planned! Bruce served more as attendant, cohort and intensive-labour-entertainment than nursemaid. All things good and necessary for Greg’s well-being though, as I’m sure you’ve ascertained (and that last service meant that Bruce slaved away doing things like hours and hours of digging a pond for Greg – while Greg handled the task of planning and observation – this job in particular deserves a photo at some point, so that the task receives due accolade...Bruce's, that is, not Greg's!) And as it took me quite a few days to get back on my feet again after that bout with the flu, it was very good timing to have Bruce aiding and abetting.
This week has been an endless stream of doctor appointments in Grenoble (for both G & K) – tiring for both of us, but at this point actually taxing me more than Greg. (The last few days I’ve actually not been well at all – a combination of factors, including our not realizing that the cornbread I’ve been indulging in all week was actually quite full of wheat – NOT wheat-free, as we had thought). We are very ready for a few quiet days here at Pré Borel.
Correction: I am ready for a few quiet days at Pré Borel. Greg is ready for a bit of quiet time here…. but also for his ESRF work to begin!!
A few gracious folk from Greg’s work have been assisting in keeping the work-part of his brain from atrophying, but even this is no longer sufficiently satisfying for him. And today he got what he wanted: permission from the brain surgeon to, as he is able, start back into work again. The conditional clause is what will present the challenge for Greg, in figuring out how it works. When is "able"? Doing some work from home is a good start, when someone can come out here and dialogue and work with Greg. But our internet connection is quite slow (often important for the work), and it is obviously not easy or practical for others to be coming here often. Nor would Greg be content with that. And he certainly wouldn’t be content working on his own here. What he thrives on is interaction and engagement with others, the sparring of ideas, the synergy of working in community. That much of his work at the ESRF depends on this is part of why he loves working there so much. So we are trying to decide how it is wisest for him to begin slowly, in short and manageable stints, to begin back there again. How to do so in a manner that makes best use of Greg’s time and energy, even when he is feeling indefatigable – for he is not!
It is here that yours truly actually has a little bit of expertise to draw upon, having learned through trial, error, pig-headedness and the realist rod of experience, just what sort of things unexpectedly draw masses of energy from those whose bodies are not quite up to the same speed as their brains. So hopefully we can teamwork some wise strategies. Today a wise visitor gave Greg some firm and caring directive to this accord – and I think she had enough authority and enough respect from Greg that he will at least try to comply!
Greg’s medical appointments this week did not really provide us with any new revelations. The right side of his face (inside and out…ie, tongue, etc) is still 100% paralysed. So we have to wait. And wait and wait, and hope and pray. But also, as the physio/kiné keeps reminding Greg, learn to work well with the face as it is, being realistic that things might not change. It will be a long time the surgeon said, before we get to the point of discussing alternative surgeries, for they want to wait to see if there is any nerve regeneration at all. And, as said before, that may take many months. Even, he said today, a year.
Greg did not see the ENT/ORL surgeon who also operated on him, because that poor man has just had surgery himself. You may remember that he was having serious problems with a nerve in his leg, exacerbated by the length of Greg’s operation – when he first came to visit Greg in the hospital he was in quite a bit of pain. Well, apparently that situation got worse, and he had to have surgery on it! Oh dear. The ENT/ORL nurses were pleased to see Greg though – and impressed by how well he looks, and that his morale was so good.
And before I go to bed, a short note on me. I’ve been on the “New Drug” for 5 weeks now. Not much of a change overall, except that, with the exception of the last 3 nights, I’ve been sleeping through the nights, not waking due to pain, for more than two weeks now. And that’s Great. Having continuous nights of uninterrupted sleep is something I have not had for seven years. It is still early days, so we will keep waiting and watching for further effects. One wonderful thing is that as of yet I have had no obvious side-effects – not even rashes at the site of injection, a side-effect that is apparently quite common. The doctor was pleasantly surprised. Our ‘visiting nurse’ has been teaching Greg how to give me the shots, as some weeks I will not be able to do it myself (the injection site rotates between 5 different locations, two of which are near my shoulders), and yesterday was the last lesson. From now on we are on our own!
(We will miss seeing our nurse so frequently!)
When we saw the rheumatologist on Monday there was one item of particular concern – blood tests show that my liver is not doing so great at the moment. He’s keeping an eye on this, but as a result has also lowered the dose of a couple of my medications…and put me back on daily steroids. Even though the steroid dose is low, this was a bit of a disappointment for me, as I have only just got back to the weight I was almost four years ago now, when I was first put on daily steroids and had to start dealing with the resulting weight gain. Hopefully results from the New Drug will kick into effect soon enough that I won’t have to be on the steroids for long – but as the doctor reminded us, a bit of extra weight is worth the cost. (I just get a bit tired of costs sometimes!)
That’ll be all for tonight, but I will try to be more regular. There is hope, for just a few hours ago a new desk was put into place for me, and I now can unpack all my thesis work (I’ve been having nagging dreams – I’ll be relieved to get back at it!), and in general have much better access and space in which to work and communicate. This also means, I hope, that I will start replying to e-mails. Please know, all you dear communicators, that I have not e-responded to ANY of your wonderful words of encouragement, or queries of concern, or even requests for information or work. You have been equally treated poorly. Hopefully beginning tomorrow, both you and Mr George MacDonald will begin to receive better treatment – but I beg for grace for time, as I slowly work through the list!
with love,
Kirstin
posted by Kirstin Jeffrey Johnson at 11:29 pm
2 Comments:
Kirstin, I'm so glad to hear about the desk and know that will make a big difference. Love Sharon
I don't think you should apologise for not responding to e-mails individually. We all understand, and in any case, you have set up this blog, so no-one can complain of being news-starved. So relax on that point.
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