Question:
In article <scu0rsco174iphg880h0qcaaqkpvsli…@4ax.com>, kcdoc…@ghg.net says… – Hide quoted text — Show quoted text -> One thing to be careful of if this is Raynaud’s regardless of what > "device" she might use, is that people with Raynaud’s and vasculitis > often have diminished sensation – i.e., it’s harder for them to tell > how hot something is. Battery heated socks and gloves usually come > with warnings not to use them if you have cold feet/hands due to > circulatory problems. Of course, this is to protect their liability. > I have battery-heated socks, the majority of my Raynaud’s problem is > in my feet – and found them to be helpful when they worked (these were > cheap and the wiring apparently failed within a couple of uses). > anyway… main thing is that if she has any problem with > distinguishing temperature, she can still use the gloves or socks but > needs to keep an eye on her skin to make sure she isn’t burned as > these devices are not great at controlling output. Same rule of thumb > (pun intended) applies to heating pads, electric blankets, etc. > on a side note: do not worry about "repeating" questions or the like. > There are new folks all the time and therefore often a question may be > new to several people even though it may not be new to some of us > "oldbies" – and the data changes relatively often too. New meds, new > therapies, etc. So ask whatever you need. If you would like to look > at the majority of old posts go to www.deja.com and click on > "Discussions" under the Search box. Then search on alt.support.lupus. > If you search from the opening screen you won’t get much as they have > pretty much delineated their main search engine from their usenet > search engine (this is usenet BTW).
That’s why the "space"gloves and socks are good, as they only use your body heat and cannot burn numbed skin. BTW, the gloves I mentioned are knit with thin threads of the "space" stuff – they’re great for Lupus patients since they are quite thin. -=JR=- — "To live in the past is a tired thing" E Carl, Navaho 1924 – 1943
Response:
One thing to be careful of if this is Raynaud’s regardless of what "device" she might use, is that people with Raynaud’s and vasculitis often have diminished sensation – i.e., it’s harder for them to tell how hot something is. Battery heated socks and gloves usually come with warnings not to use them if you have cold feet/hands due to circulatory problems. Of course, this is to protect their liability. I have battery-heated socks, the majority of my Raynaud’s problem is in my feet – and found them to be helpful when they worked (these were cheap and the wiring apparently failed within a couple of uses). anyway… main thing is that if she has any problem with distinguishing temperature, she can still use the gloves or socks but needs to keep an eye on her skin to make sure she isn’t burned as these devices are not great at controlling output. Same rule of thumb (pun intended) applies to heating pads, electric blankets, etc. on a side note: do not worry about "repeating" questions or the like. There are new folks all the time and therefore often a question may be new to several people even though it may not be new to some of us "oldbies" – and the data changes relatively often too. New meds, new therapies, etc. So ask whatever you need. If you would like to look at the majority of old posts go to www.deja.com and click on "Discussions" under the Search box. Then search on alt.support.lupus. If you search from the opening screen you won’t get much as they have pretty much delineated their main search engine from their usenet search engine (this is usenet BTW). HTH, *********************************** KCat http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
Wow, what can I say…I looked back in and there were all these responses. First of all, thanks to Janers, kim, Peanuts, Andy and Judith for taking time to write them. It is really appreciated. Andy – you are completely correct, my sister does have Raynaud’s – she was diagnosed with it and a connection with lupus was not made until much later (I suspect that is familiar to many of you). I had forgotton and just associated the symptoms together. Thanks for that sharp spot and everything you pointed out as well. >- the gloves were clumsy: in particular she couldn’t handle money with >them, so she had to take one off (ie unplug glove from wires then remove >glove) to pay for things in shops, then it was almost impossible to put >it back on again because you’ve got this stiff glove on your other >hand… and she couldn’t blow her nose either!
It does sound like a total encumbrance. My sister is very active and would certainly dislike that, she is still kind of coming to terms with living with it. However I am going to take time to read all these links and follow up with the different suggestions. I think I will probably get her several things (and club together with my family since I am still poor, having only just graduated). The charcoal and the space material gloves sound like a good idea, although trying to explain electrified wires in gloves and battery packs to customs officials does not sound appealing! Thanks again, Stephen ————————————————————— DependaNet Internet Service & Design http://www.dependanet.com
Response:
In article <bHyr5.39765$P4.305…@news1.rdc1.az.home.com>, Stephen R <step…@dependanet.com> wrote >Hello, my name is Stephen and my sister was diagnosed with lupus about 3 >years ago. I am now working in Phoenix AZ (my family is in London UK) and I >would like to get some gifts for her when I go home in six months time so I >would appreciate some suggestions from anyone as to what was particularly >good for you. I know I saw this pair of gloves that had electric wires in >them to heat them and think this would be a great gift as she hates the cold >and her hands react especially badly.
That sounds like Raynauds Phenomenon, which you can get as part of lupus or by itself. We’re in the UK. My wife had a pair of these gloves, which she got (free) from the rheumatology department of the local hospital (Up the NHS!). However, she disliked them and took them back, because: – the waistbelt battery pack was very heavy – it was connected to the gloves by wires running down the sleeves, which made it tedious to get dressed to go out – the gloves were clumsy: in particular she couldn’t handle money with them, so she had to take one off (ie unplug glove from wires then remove glove) to pay for things in shops, then it was almost impossible to put it back on again because you’ve got this stiff glove on your other hand… and she couldn’t blow her nose either! >However I have not been able to track >them down (grr). Please does anyone know about this? Thanks.
Another point is that you’d have to get them in the UK because of the different mains supplies & plugs. And think of the fun you’d have at the airport Xray machine! If you do decide she’d benefit from them, one firm that may help is mailto:i…@bewell.co.uk – and there may be more up-to-date designs. Also www.activeenterprise.demon.co.uk might be worth a look-at. A possibly better idea is charcoal sticks in metal sleeves like a small glasses case. They are sold as sporting handwarmers. You set fire to one end (both, if it’s snowing) of the stick and it glows. Then put it in the case, slip that into its protective cloth wrapper, and hold it. Have a look at the UK Raynauds & Scleroderma Society site on <URL: http://www.raynauds.demon.co.uk> >I am new to these newsgroups but am happy to find this group – is there a >search function so that I dont annoy people by repeating what has already >been said or asked?
Not that I know of – try Deja (but most of their archives sort of became unavailable recently). Anyway ask it again – we won’t mind. Or try the FAQ which is on my site (URL below) or KCat’s and is posted here every 2 weeks (well maybe three..) >I am using Outlook Express to access it.
Every apple has it’s worm :) — Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>
Response:
Stephen~~The Sharper Image catalog carries something similar to what may be the right gloves for her~~they helped me in the bitter cold. Kim * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping. Smart is Beautiful
Response:
> I would like to get some gifts for her when I go home in six months time so I >would appreciate some suggestions from anyone as to what was particularly >good for you.
Hi Stephen, I am 20 and have had Lupus for just over 10 years. I think the best gift I have gotten was two years ago when my father got me an electric blanket. I got cold easily, even in the summer, so it has really come in hand. Also, things like oatmeal based lotions and soaps are good. I like the Aveeno products. They do not irritate the skin and are odor free. You can find these at any drug or department store. Also, candles and bubble bath make excellent gifts. I love taking warm bubble baths when I am real sore. It helps me to relax. Well, I hope these help give you some ideas. Good luck and God Bless! Peanut :-)
Response:
TrySunPrecautions 1-800-882-7860 or www.sunprecautions.com KOALA KONNECTIOM 1-888-GO-KOALA SUN…@KOALAKON.COM TRIPLE J SPORTSWEAR 1-800JJJ-5142 SOLAR ECLIPSE TM 1-800-878-9600 ALL THIS INFO FROM BAY AREA LUPUS FOUNDATION WWW.BALF.ORG I,V This may be something that she can use. It is sun protective clothing. Go to these sites and check it out. Most of us lupies have some problem with the sun. so I think a gift of this nature is really nice….Little expensive but hey we deserve it…LOL Good hunting….Janers
Response:
Hello, my name is Stephen and my sister was diagnosed with lupus about 3 years ago. I am now working in Phoenix AZ (my family is in London UK) and I would like to get some gifts for her when I go home in six months time so I would appreciate some suggestions from anyone as to what was particularly good for you. I know I saw this pair of gloves that had electric wires in them to heat them and think this would be a great gift as she hates the cold and her hands react especially badly. However I have not been able to track them down (grr). Please does anyone know about this? Thanks. I am new to these newsgroups but am happy to find this group – is there a search function so that I dont annoy people by repeating what has already been said or asked? I am using Outlook Express to access it. Stephen. ————————————————————— DependaNet Internet Service & Design http://www.dependanet.com —————————————————————
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