I wanted to wish you all a happy Christmas and a peaceful and prosperous New Year.
At this time of year too, we should remember the nativity story.
Enjoy the link.
Friday, December 24, 2010
Thursday, December 23, 2010
Cold Hands, Warm Heart
I have had cold hands a lot recently - and I am absolutely delighted to report this to you!
Now, I'm sure that you are wondering just what on earth I am going on about (no change there then), as most people aren't actually too happy having cold anything, and that includes fingers. Me, I'm happy, because I have Raynaud's disease (also called Raynaud's syndrome). Now again, I guess there are people out there who are wondering if I've lost my marbles as plainly Raynaud's is no fun at all but don't worry, I'll get to that...in time!
Around 3 years ago (or maybe even more), I started to have problems with my hands in the cold. My fingers would go absolutely white - nails and all and they really looked odd - kind of like some of the victims' skin in episodes of CSI. This is a not good look - especially when it's your own fingers. This could happen to one finger, many fingers, or just part of a finger - there never seemed to be any rhyme or reason to it and it just looks really, really odd.
For sure, cold triggered it, but for me, rapid changes in temperature are much more important and touching cold wet metal is just the worst thing in the world. That means pushing a wheelchair in the rain without gloves is definitely not recommended! Of course, gloves are the first thing that people talk about with Raynaud's and many folks are very ready with advice - usually based around their own experiences. I've actually had quite a few women say to me that they too have Raynaud's - "Oh yes, I have very cold hands you know, I always wear gloves /feel cold etc etc", but it's hard to get across to them that it's not just cold hands. Those white fingers have no blood in them - yes, that's right, no blood - that's why they're white - it's because the blood vessels supplying them shut down. When I first heard that, I couldn't bring myself to believe it and so stuck a pin in my own white finger - well, guess what, it didn't bleed at all! What's even more freaky, is that about 20 minutes later when my finger turned blue and then red as the blood came back, it started bleeding then. The red and blue stage is really painful too - simple cold hands are a doddle to cope with by comparison.
This started out as an occasional problem, but over time, gradually got worse. I reached the point where I could be somewhere hot but going into air conditioning would trigger it; I couldn't take food out of the freezer without wearing oven gloves; walking in between the chiller cabinets in the supermarket was torture; peeling the potatoes had to be done under a running warm tap and I dreaded those summer showers which drop the ambient air temperature by a degree or so. In the end, I went to see my doctor as it was just affecting my quality of life so much...you just don't realise how wearing it can be when it's such a year round problem - you can't wear gloves all year round, just in case, after all.
Anyway, my doctor was really helpful and suggested medication - a drug called niphedipine, but there was a drawback - once I started taking it, I would have to take it forever. It's actually a drug that lowers your blood pressure (not ideal if like me, you have lowish blood pressure to start with) and so I didn't immediately agree to it, but I think there comes a point where you feel you are reaching the end of your tether with something. About 6 months later, after a particularly bad attack, where I lost several fingers for several hours (yes really!), I went back to the doctor and started taking the drugs. I continued to get attacks for a bit, but they got less and less over time, as my body adjusted to the tablets.
All of which, leads me to now. This winter has been the coldest for many years, we've had snow and minus lots in temperature and the cold has gone on day after day after day. There have been days when I've gone out and forgotten my gloves; I've thrown a snowball with my bare hands and I've opened my car door without pulling my sleeve down over my fingers. I've done all of these things without an attack and I can't tell you how good that is. What seems all the more amazing to me is that my hands actually get cold before warming up again. So, I guess that means that studies now apply to me - since I now have cold hands, then I maybe I really do have a warm heart.
One last thing, in case you are wondering about the reason for this post (apart from me being happy!) - it's just that if anyone is out there Googling Raynaud's, then maybe they will come across this post, maybe they will tap on their keyboard with their dead white fingers and just maybe make a note of the drug. Maybe they will go to their doctors and then, just maybe, they will be helped too....That's all...
Now, I'm sure that you are wondering just what on earth I am going on about (no change there then), as most people aren't actually too happy having cold anything, and that includes fingers. Me, I'm happy, because I have Raynaud's disease (also called Raynaud's syndrome). Now again, I guess there are people out there who are wondering if I've lost my marbles as plainly Raynaud's is no fun at all but don't worry, I'll get to that...in time!
Around 3 years ago (or maybe even more), I started to have problems with my hands in the cold. My fingers would go absolutely white - nails and all and they really looked odd - kind of like some of the victims' skin in episodes of CSI. This is a not good look - especially when it's your own fingers. This could happen to one finger, many fingers, or just part of a finger - there never seemed to be any rhyme or reason to it and it just looks really, really odd.
For sure, cold triggered it, but for me, rapid changes in temperature are much more important and touching cold wet metal is just the worst thing in the world. That means pushing a wheelchair in the rain without gloves is definitely not recommended! Of course, gloves are the first thing that people talk about with Raynaud's and many folks are very ready with advice - usually based around their own experiences. I've actually had quite a few women say to me that they too have Raynaud's - "Oh yes, I have very cold hands you know, I always wear gloves /feel cold etc etc", but it's hard to get across to them that it's not just cold hands. Those white fingers have no blood in them - yes, that's right, no blood - that's why they're white - it's because the blood vessels supplying them shut down. When I first heard that, I couldn't bring myself to believe it and so stuck a pin in my own white finger - well, guess what, it didn't bleed at all! What's even more freaky, is that about 20 minutes later when my finger turned blue and then red as the blood came back, it started bleeding then. The red and blue stage is really painful too - simple cold hands are a doddle to cope with by comparison.
This started out as an occasional problem, but over time, gradually got worse. I reached the point where I could be somewhere hot but going into air conditioning would trigger it; I couldn't take food out of the freezer without wearing oven gloves; walking in between the chiller cabinets in the supermarket was torture; peeling the potatoes had to be done under a running warm tap and I dreaded those summer showers which drop the ambient air temperature by a degree or so. In the end, I went to see my doctor as it was just affecting my quality of life so much...you just don't realise how wearing it can be when it's such a year round problem - you can't wear gloves all year round, just in case, after all.
Anyway, my doctor was really helpful and suggested medication - a drug called niphedipine, but there was a drawback - once I started taking it, I would have to take it forever. It's actually a drug that lowers your blood pressure (not ideal if like me, you have lowish blood pressure to start with) and so I didn't immediately agree to it, but I think there comes a point where you feel you are reaching the end of your tether with something. About 6 months later, after a particularly bad attack, where I lost several fingers for several hours (yes really!), I went back to the doctor and started taking the drugs. I continued to get attacks for a bit, but they got less and less over time, as my body adjusted to the tablets.
All of which, leads me to now. This winter has been the coldest for many years, we've had snow and minus lots in temperature and the cold has gone on day after day after day. There have been days when I've gone out and forgotten my gloves; I've thrown a snowball with my bare hands and I've opened my car door without pulling my sleeve down over my fingers. I've done all of these things without an attack and I can't tell you how good that is. What seems all the more amazing to me is that my hands actually get cold before warming up again. So, I guess that means that studies now apply to me - since I now have cold hands, then I maybe I really do have a warm heart.
One last thing, in case you are wondering about the reason for this post (apart from me being happy!) - it's just that if anyone is out there Googling Raynaud's, then maybe they will come across this post, maybe they will tap on their keyboard with their dead white fingers and just maybe make a note of the drug. Maybe they will go to their doctors and then, just maybe, they will be helped too....That's all...
Thursday, December 16, 2010
Van Gogh was an archer!
Not long ago, I was asked to give a talk to a school assembly - which is always a slightly daunting thing to do. It doesn't matter why you go to talk to the children, they always seem to have their own agenda and this never shows up until you get to the 'any questions' section.
You say your bit to them and then ask if they want to say anything to you, or ask any questions and with kids, being kids, there is always a forest of hands that go up. I admit, that I am always delighted when they ask questions about my disability - kids just don't seem to have those adult hang ups and they just come straight out and call a spade a spade. You do get some odd things asked sometimes though - I had one little boy once who asked me how fast I could run - which was sort of strange since I was sat in a wheelchair in front of him. I think he just didn't see the chair at all, he just saw me as an adult, who happened to be sat down.
Some kids put their hands up just to tell you stuff that is completely unrelated to anything that has gone before - things like "my dad is taller than Billy's dad", and you wonder why they choose that moment to tell you...
On this occasion, after a few questions about after-school clubs (one of which is an archery club), a little girl put her hand up and asked very seriously "Van Gogh wasn't a very good archer was he?" I have to be honest, that question kind of threw me rather, but I just had to know more and so (just as seriously), I asked her why she had asked. "Well," she said, "he can't have been very good if he shot his own ear off!" I was still a bit curious (actually a lot curious) and so (trying hard to keep a straight face), I asked her how she thought he could have shot his own ear off. "Well," she said, "Mr Jones said Van Gogh was an archer and he lost his ear, so I think he must have pulled the string on the bow too far back and caught it behind his ear, pulling it off!". "Hmm", I said, "Who is Mr Jones?" - "He's our art teacher", she replied. "Ah!", I said, "Did Mr Jones perhaps say Van Gogh was an artist, not an archer?" The little girl stopped and considered for a bit...."Yes, maybe that was it...but then how did he lose his ear?"
At that another forest of hands went up - all the kids wanted to know the gruesome details of how Van Gogh lost his ear...did he really cut it off? Did he send it to his girlfriend? Was there lots of blood? Has it been pickled for us all to see? Ah, kids, you just never know what they will come up with next...
You say your bit to them and then ask if they want to say anything to you, or ask any questions and with kids, being kids, there is always a forest of hands that go up. I admit, that I am always delighted when they ask questions about my disability - kids just don't seem to have those adult hang ups and they just come straight out and call a spade a spade. You do get some odd things asked sometimes though - I had one little boy once who asked me how fast I could run - which was sort of strange since I was sat in a wheelchair in front of him. I think he just didn't see the chair at all, he just saw me as an adult, who happened to be sat down.
Some kids put their hands up just to tell you stuff that is completely unrelated to anything that has gone before - things like "my dad is taller than Billy's dad", and you wonder why they choose that moment to tell you...
On this occasion, after a few questions about after-school clubs (one of which is an archery club), a little girl put her hand up and asked very seriously "Van Gogh wasn't a very good archer was he?" I have to be honest, that question kind of threw me rather, but I just had to know more and so (just as seriously), I asked her why she had asked. "Well," she said, "he can't have been very good if he shot his own ear off!" I was still a bit curious (actually a lot curious) and so (trying hard to keep a straight face), I asked her how she thought he could have shot his own ear off. "Well," she said, "Mr Jones said Van Gogh was an archer and he lost his ear, so I think he must have pulled the string on the bow too far back and caught it behind his ear, pulling it off!". "Hmm", I said, "Who is Mr Jones?" - "He's our art teacher", she replied. "Ah!", I said, "Did Mr Jones perhaps say Van Gogh was an artist, not an archer?" The little girl stopped and considered for a bit...."Yes, maybe that was it...but then how did he lose his ear?"
At that another forest of hands went up - all the kids wanted to know the gruesome details of how Van Gogh lost his ear...did he really cut it off? Did he send it to his girlfriend? Was there lots of blood? Has it been pickled for us all to see? Ah, kids, you just never know what they will come up with next...
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