Viva la Raynaud's!
Posted 10 March 2009 - 04:50 AM
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
Posted 10 March 2009 - 08:37 AM
We love ya, despite the fact we rarely see your awesome posts...unless we happen to meander over to your blog section
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!
Posted 10 March 2009 - 09:29 AM
Posted 10 March 2009 - 12:10 PM
I'm 'due south' of Susie and we woke up to snow and freezing temperatures too. 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.
(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
Posted 11 March 2009 - 04:51 PM
All normal and I am glad you brought up the subject even if I am selfish and turn all your concerns into mine.
Speak up because you gave me an outlet tonight to voice the same concern.
Posted 11 March 2009 - 10:30 PM
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
Posted 12 March 2009 - 02:48 AM
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)
Posted 12 March 2009 - 05:57 AM
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.
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.