Comments on: The best of times, the worst of times http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/ Stuff cubed plus one Sat, 06 Feb 2010 14:03:30 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: Harald Striepe http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/comment-page-1/#comment-7152 Harald Striepe Sat, 16 May 2009 22:37:48 +0000 http://christopherowen.id.au/blog/?p=28#comment-7152 I am writing this from an oncology ward in Silicon valley dealing with complications from colon cancer treatment. My son and I were suspected of CMT due to some early signals such as you can whack below our knees as hard as you want without response, but more seriously, my son has walking and running issues. A $5K DNA test turned out negative, and I decided that nerve propagation tests etc. were kind of pointless. Luckily, he grew out of it, but it's something to keep an eye on. My chemo includes Oxaliplatin, which causes peripheral neuropathy as one of the many thrilling side effects. I found a Taiwanese peer reviewed double blind study that showed taking high doses of glutamin the day of chemo and following 6 days make a very significant difference of the effect. The dose is 15g twice a day dissolved in water. Since Oxaliplatin also creates extreme temp sensitivity, the water has to be tepid for me - delicious.... Anyway, it appears to make a significant difference. Perhaps it could have a similar impact on your symptoms? I am writing this from an oncology ward in Silicon valley dealing with complications from colon cancer treatment.
My son and I were suspected of CMT due to some early signals such as you can whack below our knees as hard as you want without response, but more seriously, my son has walking and running issues. A $5K DNA test turned out negative, and I decided that nerve propagation tests etc. were kind of pointless. Luckily, he grew out of it, but it’s something to keep an eye on.
My chemo includes Oxaliplatin, which causes peripheral neuropathy as one of the many thrilling side effects. I found a Taiwanese peer reviewed double blind study that showed taking high doses of glutamin the day of chemo and following 6 days make a very significant difference of the effect. The dose is 15g twice a day dissolved in water. Since Oxaliplatin also creates extreme temp sensitivity, the water has to be tepid for me – delicious….
Anyway, it appears to make a significant difference. Perhaps it could have a similar impact on your symptoms?

]]> By: sue http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/comment-page-1/#comment-7123 sue Sat, 11 Oct 2008 13:04:47 +0000 http://christopherowen.id.au/blog/?p=28#comment-7123 i was recently diagnosed with hmsn type 2 which is cmt. i have been searching desperately for information and people with the same condition . i am currently working and have been for 7 years first in a deli which turned to be extremely painful and i mean extremely i have now been transfered to the cashier end of things with the same company even though there are days where you just think you cannot stand any longer because of th pain.i am an extremely positive person and do cope as others do but it nice to know that some one understands the reality of coping i was recently diagnosed with hmsn type 2 which is cmt.
i have been searching desperately for information and people with the same condition . i am currently working and have been for 7 years first in a deli which turned to be extremely painful and i mean extremely i have now been transfered to the cashier end of things with the same company even though there are days where you just think you cannot stand any longer because of th pain.i am an extremely positive person and do cope as others do but it nice to know that some one understands the reality of coping

]]> By: blue http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/comment-page-1/#comment-7115 blue Sat, 27 Sep 2008 01:43:00 +0000 http://christopherowen.id.au/blog/?p=28#comment-7115 Thanks for writing. I just got back from many many days at the hospital defending my daughter's pain as real and not just being a stubborn or willful child. My mom had similar symptoms and they have sent out the genetic tests for CMT. I am really tired but glad I found your blog. Thanks for writing. I just got back from many many days at the hospital defending my daughter’s pain as real and not just being a stubborn or willful child. My mom had similar symptoms and they have sent out the genetic tests for CMT. I am really tired but glad I found your blog.

]]> By: christopherowen.id.au » FedEx Day 8 summarised http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/comment-page-1/#comment-7073 christopherowen.id.au » FedEx Day 8 summarised Tue, 01 Jul 2008 22:45:08 +0000 http://christopherowen.id.au/blog/?p=28#comment-7073 [...] was a somewhat emotional FedEx day for me, being almost precisely a year from FedEx Day 6, when things took an unexpectedly bad turn for me and began what was without a doubt the most challenging, and changing six months of my life. I made [...] [...] was a somewhat emotional FedEx day for me, being almost precisely a year from FedEx Day 6, when things took an unexpectedly bad turn for me and began what was without a doubt the most challenging, and changing six months of my life. I made [...]

]]> By: Keith Brophy http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/comment-page-1/#comment-6920 Keith Brophy Thu, 18 Oct 2007 09:36:05 +0000 http://christopherowen.id.au/blog/?p=28#comment-6920 Chris, Inspiring stuff. I wish you all the best and keep up that attitude. And dont worry - the semicolon is way over-rated. Ex-Atlassianite Keith Chris,

Inspiring stuff. I wish you all the best and keep up that attitude. And dont worry – the semicolon is way over-rated.

Ex-Atlassianite
Keith

]]> By: Cancer 2.0: the Killer App « Radiowalker: Tech Business Beat http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/comment-page-1/#comment-6919 Cancer 2.0: the Killer App « Radiowalker: Tech Business Beat Mon, 15 Oct 2007 13:32:39 +0000 http://christopherowen.id.au/blog/?p=28#comment-6919 [...] read fellow Atlassian Chris’ incredible blog the day before my MRI that detected this current tumor. These problems make you face your [...] [...] read fellow Atlassian Chris’ incredible blog the day before my MRI that detected this current tumor. These problems make you face your [...]

]]> By: Scott http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/comment-page-1/#comment-6915 Scott Wed, 03 Oct 2007 18:41:39 +0000 http://christopherowen.id.au/blog/?p=28#comment-6915 Chris, You are not weak at all, quite the opposite. The fact that you are moving forward with courage and optimism is nothing short of heroic. I suffer from persistent migraine aura without infarction and have suffered many of the horrors that you have described. Stay strong man. Chris,

You are not weak at all, quite the opposite. The fact that you are moving forward with courage and optimism is nothing short of heroic. I suffer from persistent migraine aura without infarction and have suffered many of the horrors that you have described. Stay strong man.

]]> By: jen http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/comment-page-1/#comment-6875 jen Wed, 12 Sep 2007 07:34:03 +0000 http://christopherowen.id.au/blog/?p=28#comment-6875 I came accross this by chance when looking up stuff for a friend who is going through the mri mire at the moment - I have to say your symptom descriptions are excellent - and well written - and better than a lot of Doctors and medline descriptions - at least in layman from the patients angle (and why isnt there more of that?) thats about all I wanted to say - really - that and good luck I came accross this by chance when looking up stuff for a friend who is going through the mri mire at the moment – I have to say your symptom descriptions are excellent – and well written – and better than a lot of Doctors and medline descriptions – at least in layman from the patients angle (and why isnt there more of that?)
thats about all I wanted to say – really – that and good luck

]]> By: Brett Jackson http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/comment-page-1/#comment-6828 Brett Jackson Wed, 29 Aug 2007 03:12:26 +0000 http://christopherowen.id.au/blog/?p=28#comment-6828 hey Chris Somewhere in the middle of that dark journey you've described, we had a chat at one of the after work drinks. I, in typical fashion, stomped right in asked what was up with your gait etc and now reading this I realise it must have been days after you found out that CMT had returned with a vengence. For what it is worth, having just met you a little while back I assumed you had been dealing with the symptoms for years and they had slowly gotten worse, that you were just learning and coping with a sudden onset of these challenges is incredible. I am amazed and inspired by your grace under pressure, your spirit and your strength of character. I'm very proud to be working with you. hey Chris

Somewhere in the middle of that dark journey you’ve described, we had a chat at one of the after work drinks. I, in typical fashion, stomped right in asked what was up with your gait etc and now reading this I realise it must have been days after you found out that CMT had returned with a vengence. For what it is worth, having just met you a little while back I assumed you had been dealing with the symptoms for years and they had slowly gotten worse, that you were just learning and coping with a sudden onset of these challenges is incredible. I am amazed and inspired by your grace under pressure, your spirit and your strength of character.
I’m very proud to be working with you.

]]> By: Keith Baldridge http://christopherowen.id.au/blog/2007/08/14/the-best-of-times-the-worst-of-times/comment-page-1/#comment-6826 Keith Baldridge Tue, 28 Aug 2007 16:56:46 +0000 http://christopherowen.id.au/blog/?p=28#comment-6826 Chris, I don't know you and it's very likely that I will never meet you, but I'll never forget you. Obviously and realistically I won't be thinking about you all the time, however when I recall this blog entry and the piece of your life you've chosen to share, I will pray for you. And wonder how your journey is going. Where there is life, there is hope. "In this crazy world, there's an enormous distinction between good times and bad, between sorrow and joy. But in the eyes of God, they're never separated. Where there is pain, there is healing. Where there is mourning, there is dancing. Where there is poverty, there is the kingdom." Henri J. M. Nouwen Chris,

I don’t know you and it’s very likely that I will never meet you, but I’ll never forget you. Obviously and realistically I won’t be thinking about you all the time, however when I recall this blog entry and the piece of your life you’ve chosen to share, I will pray for you. And wonder how your journey is going.

Where there is life, there is hope.

“In this crazy world, there’s an enormous distinction between good times and bad, between sorrow and joy. But in the eyes of God, they’re never separated. Where there is pain, there is healing. Where there is mourning, there is dancing. Where there is poverty, there is the kingdom.” Henri J. M. Nouwen

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