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Viva la Raynaud's!

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I hardly ever post on the messageboards -- please forgive me! I hope you all know that even though I don't post often and my head is bursting with things to say -- I am still here and very much with you all.


Now my reason for posting?

I suppose we all get frustrated in one way or another, who woudn't with all we have to put up with. The old saying comes to mind "There's always someone worse off than yourself" That of course is perfectly true and I accept that with a thankful heart.

My problems are so few when I think of others and it hardly seems right for me to complain about my ailments. My biggest complaint by far has to be the problems I face with Raynaud's. You may wonder why I choose this affliction as opposed to dismotility of the esophagus and the fact I have a feeding tube? If I have to be honest -- I don't know. Maybe it's because Raynaud's is noticeable and the only thing that associates my disease with having scleroderma.


I'm frustrated because we've had the longest winter I can remember. I want to go outdoors, I want to do all the things I know I was once capable of but can't!

I get frustrated with myself because I can't stay outside when the sun shines and just a little walk round the yard will give me agony in my feet and fingers.

"Oh shut up moaning." That's what I keep telling myself but I'm not trying to gather sympathy, oh no, just wanting to give out a tiny scream.


I suppose when I put it into perspective, if all I had to worry about was my aching numb fingers and toes, I should consider myself lucky --- and I do!


Viva la Raynaud's, eh!


Love and hugs to all

Barbara xxx

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Hi Barbs,


We love ya, despite the fact we rarely see your awesome posts...unless we happen to meander over to your blog section :rolleyes:


Now, you may come here and moan, squeak or whine, anytime you like! After all, you are a special member of the family too!


As for the Raynauds and cold temperatures...Oh, how I feel the same! But you are so right, we have to be so very careful: hands, nose, face, ears and feet/toes.


We're supposed to be going into spring, in my neck of the woods, across the ocean from you. Yet, one would never know it, by the 4 below zero we had this a m! I have 3-4 inches of snow I would like to move, but it only happens to be 8 degrees and with the wind, it's just going to have to stay where it is! However, once it warms up (Friday), I hope to get out and get some fresh air!


Hopefully, neither of us has to wait much longer to enjoy the outdoors....I'm ready!

Special Hugs,


Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Barbara the winter has certainly been long and very cold and the aches and pains due to the Raynaud's also gets me down. I just wish I could hibernate and wake up when its nice and warm. At least when we do get some sunshine now there is a feeling of warmth in it. Oh for a lovely summer!



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Hi Barbara!


I'm 'due south' of Susie and we woke up to snow and freezing temperatures too. :huh: As I'm sitting here plinking away, I can honestly say I know how you feel! 100% empathy. Ayup, in the grander scheme of things, I guess I'd say Viva la Raynaud's too. But my goodness, I'd really like to be complaining about the heat.


Here's a warm hug for you! Keep blogging - it keeps me laughing and then I forget the cold nose, fingers, and toes.

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Perfectly normal to feel the way you do. You could not worded it much better to but its always nice to have an outlet like this to express yourself and blow some steam. Myself, out of all my symptoms I hate Raynaud's due to it taking away ability to do things when cold. My wife now does all our snow removal, and even in spring and summer if I have stress my hands get bad and find myself dependent on others.


All normal and I am glad you brought up the subject even if I am selfish and turn all your concerns into mine. :lol:


Speak up because you gave me an outlet tonight to voice the same concern.


Thank you.



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Oh Boy! I'm so glad that I'm not the only one moaning about Raynaud's.

It seems like you all feel the same and that makes me feel a whole lot better knowing that even though you have to cope with more major issues -- you still find having Raynaud's a challenge!


Mark, I'm so glad that you could let off some steam too.


Thanks so much for all your replies as ever more than appreciated -- I love you guys!


Stay warm -ish


Love and hugs

Barbara xxx

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Of all the things I have going on Raynaud's is the most prevelant. I too have the motility problems in my esophagus and intestines as well as ILD but I think raynaud's is always bothersome. Just washing a dish or getting something from the fridge triggers an attack for me. If I could just get this ulcer to go away that I have had for months I would be happy. Unfortunately it is going no where fast and of course I bang it a few times each day. If the warm air would kindly makes it way up here to New England I would be so grateful!!!




Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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I feel like it's a race to hurry back and forth from the house to the car, to the grocery store, appointments or having to shovel snow in shifts at 15 min. intervals, etc. I'm always doing a raynaud's check to see if and when my fingers have gone purple or blue. It's like a timer...okay time to get them warmed up, quick!! A change of weather and season always make the difference. Just yesterday, the sun came out in all its glory and I thought Great, a warmer and sunny day! I was lulled into believing the sun made a difference, until I stepped out and the wind chill was blowing close to zero degrees. B)


Raynaud's is one of my pet peeves right up there with arthritic pain. In Sclerodermia land where anything is possible, I would tell Ray Naud's, "Make my day." and when it makes a move, I would blast it to smithereens with "Hasta la vista, baby."


Hang in there Barbara, a change in season is coming soon. In the meantime, keep the home fire going. :)


Warm hugs,


Live well, Laugh often, Love much

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