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Raynaud's treatments



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05/20/2008 10:39
Snowball
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Has everyone seen the Winter/Spring 2008 issue of COLD CUTS? Newsletter reports new therapies that may be on the horizon such as Botox and Viagra (however, with cautions). There is also an article about "success with Niacin" (someone recently mentioned this on the discussion page as a therapy). Ever cold--Snowball
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05/21/2008 19:16
JoyfulOne
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Thanks for the heads up! I've never heard of Cold Cuts...is it on the internet or is it by snail mail? Sounds like it's a good newsletter and I'd like to check it out. I've had raynauds since at least 1995, and nowhere along the line has any MD offered any kind of treatment to help it. The standard thing they'd all tell me was to keep my hands and feet warm no matter what. Gee, I would have tried the niacin lol. I don't know about you, but I can freeze in a gentle breeze even if the sun's shining and it's almost 80 hahaha. (People often think I'm flaky cause it's hot out and I have a sweater on) Anyways, will have to look into that newsletter. Thanks!
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05/22/2008 06:36
Snowball
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Hi, Joyful One! The COLD CUTS newletters are under the RAYNAUD'S ASSOCIATION webpage http://www.raynauds.org/index.cfm

On the left side, click on NEWSLETTERS. A screen will come up that shows all the issues available for reading from the current WINTER/SPRING 2008 issue all the way back to the APRIL 1994 issue. Good information and reading when you have the time!

You can also elect to click on CONTACT US and you have the opportunity to join the Raynaud's Association AND to request to be added to the mailing list to receive the newsletters. I just received mine by snail mail as my computer access is sometimes limited.

I, too, am looked at like I'm a total freak as unless the wind is VERY WARM, I have to wear earmuffs in spite of the temps and the warmer seasons. Gloves in stores, especially the grocery store and ESPECIALLY the cold section, mean I wear gloves almost for 100% of my trips. I am continually stunned by the rude stares and insensitive comments (and often OFFENSIVE remarks) from total strangers. I am trying to use this disorder as an opportunity to EDUCATE people although some are apparently so ignorant that I think education is an impossible cause. I also try to use these opportunities to improve my patience (what little I have--lol). It takes me great strength not to be rude back and often times I get really upset over these episodes. My husband continually tells me to not let it bother me (easier said than done!). We frosties just have to do what we have to do and nevermind about these sort of rude folks and simply ignoring them is often the best remedy although that is very hard for me to do! Have a blessed day! Ever cold--Snowball



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05/22/2008 18:16
JoyfulOne
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Thanks for letting me know where to find Cold Cuts! As soon as I get off MD here, I'm going to check it out and see if there's some pearls of wisdom that can help.

Can I ever relate to gloves in the grocery store's cold section. As soon as I touch that frozen stuff to throw it in the cart I immediately have frozen fingers, and I just get cold all over. Isn't it amazing that people who can't understand it, and can't relate, are like that?! I try to educate people about it all too, but it's like their mind track is stuck on their own opinion. I don't know about you, but my Dr has me listed as disabled. Everything I have you really can't tell from the 'outside'. If I had a deformity that was visible, it would be much easier to explain. I've had a few people (healthy) tell me that there's no reason on earth why I can't work, yet my Dr says there's no way I can. Rudeness abounds with lots of folks who have no understanding, and just because you look 'alright' to them doesn't mean there aren't problems that they can't see. I try to be real patient with those folks, but it is sometimes hard to not get upset. It's just frustrating sometimes, isn't it?!

Thanks again for the link! I'm going to sign off for the evening here and head over there and check it out. Have a great evening Snowball!

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06/05/2008 13:17
Snowball
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Hey! Great long message. Thanks ever so much! You are right about your observations of the things wrong on the "inside" that folks can't see. I'm wondering how long I will be able to work and I stress about that sometimes. I've tried to set up all my bills with credit life, disability, etc. so my poor hubby won't be totally overwhelmed should I kick the bucket. I've consolidated all my bills and hope to be blessed to work at least another couple of years. I don't have much of a diagnosis other than Raynauds, Carpal Tunnel Syndrome in both wrists, osteoarthritis in both hips and suffer from severe allergies (chemicals, paint, dust, etc). But, I just don't feel like myself and I'm afraid something is going on underneath. In the meantime, I try to just forget about things and go onward. I've also been battling lung problems the past couple of years (lung spots, bronchitis, pneumonia) and I am supposed to go in November for yet another CT scan on my lung. If there is NO change, the doc will assume that it is benigh...take good care of yourself. Thanks every so much for staying in touch! Ever cold--Snowball
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