winnie97

Shoulder operation

25 posts in this topic

Hello Svoss

 

Here's a late welcome to the forums! You are a perfect example of the why and how of being your own advocate :emoticon-congratulations:!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Svoss,

 

A late welcome from me too! I'm down in Colorado, so we're practically neighbors. I hope we'll get to hear a lot from you in the future.

 

Best wishes and welcome again,


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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Thanks Jeannie(CO) & Amanda (UK) and everyone for your good wishes.

 

I am so happy to have found this site and all you kind and caring people.

 

It does become somewhat exhausting to try to explain this disease to someone, who will almost inevitably shake their head, blink rapidly at me, and respond something such as, "Scler-o-what-apous? Isn't that close to the sinuses?"

 

Well .... jeepers, I guess it could be. Or there's the "if it's that rare then you probably really don't have it." Okay. Well,obviously ... why didn't I think of sticking my head in the sand like that? Or possibly, "My Aunt Millie had that 50 years ago ... she drank vinegar and bicarbonate of soda every day for a week and she got rid of it." And everything else in her system I suppose? I only put that stuff inside my body when it's encased in red velvet cake. Maybe she ate a lot of red velvet cake ....

 

So usually I just withdraw a little more about any 'sharing,' do a better job of 'acting' ok and join everyone else in ignoring the elephant in the room ... until the moment comes (usually in a group) when someone says, "Say, you look different .... has something happened to your lips? And your hands?" Yes, actually I ran into a dinosaur. I think it was an awful-lopogus while I was traveling to Sinusitis where I contracted this strange but not contagious type of cold or something from drinking the water there. A Dr. Ostrich-most-the-time-agus prescribed a rare medicine to which I have had these really bizarre side effects. So I just eat red velvet cake and eventually it will all disappear. And that is laughed off and on we go.

 

It's wonderful to just be able to be. I can do that here with you. Thank you. It's nice to know that though I walk a different path than most, and though my experience along the way is not the same as most, I'm no longer walking that path alone.

 

Svoss xxx

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Svoss, I think we should set up an official study via the ISN of the benefits of having red velvet cake twice a day! Count me in!


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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Hi Svoss,

 

You are absolutely not alone in dealing with people's odd reactions to the word scleroderma. Awareness seems to go in two major directions. The first is, they never heard of it, so it must not exist and you must not have it. The second is that they have heard of it, in fact knew someone who died of it (or saw the movie), and therefore, because you are still living, you must not have it. Well, yes, that's all absurdity.

 

Sometimes I'm astounded when I run into caring and open-minded people who say, "I've never heard of it, please tell me more about it." Then I'm in such deep shock that I hardly even know what to say.

 

It's also been quite an awakening for me when I had rotator cuff surgery a few months ago. People have come out of the woodwork everywhere I go, full of sympathy and concern. It seems everyone knows someone who has had rotator cuff surgery and the word on the street -- everywhere -- seems to be unanimous agreement that it is very painful. Instant sympathy. Instant concern. Meanwhile any mention of scleroderma usually draws a perplexed look, a little shake of the head, and a dramatic dwindling of interest. I can understand it though because it is a bit like spouting a word from a foreign language and expecting to be understood. Sclero-what-its?

 

Working together, we can all do whatever we can to raise awareness of scleroderma. We offer books, brochures, awareness bracelets and even school report resources to help us reach out to our loved ones and to the general public.

 

If we all say it loud enough and long enough, some day our message will be heard and those who follow behind us will be greeted with more compassion and understanding.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Svos

 

"Scler-o-what-apous? Isn't that close to the sinuses?" :great: Love the "elephant in the room" reference too! :bravo:

 

What's red velvet cake?

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

 

Ahhhh - red velvet cake ... one of life's delectable moments ... sensous ... rich ... beautiful ... moist ... full of calories (of course) and worth every one!

 

It's a cake attributed to the Deep South (which are the southeastern) United states. Made from scratch it's fantastic ... there are box mixed out there that are ... great for kids cupcakes. It's basically a chocolate cake with red food coloring and cream cheese frosting. Beautiful at Valentine's day baked in heart shaped pans, cut the layers in 1/2 and a six-layer version is lovely. Also beautiful at holiday ... or for anyone's birthday ... a wedding ... or anytime you want to. One of the parts of making the cake is tapping baking soda over a tablespoon of vinegar ... and letting the two foam into the cake, then gently folding just prior to pouring in the pans.

 

In south Georgia, they double (sometimes maybe even triple) the recipe, bake it in 10" round pans and resulting in a cake nearly a foot tall.

 

I can post the recipe if you like.

 

Svoss

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Hi Svoss,

 

Ah, ah, hmm, how gorgeous is that!!! :great:

 

My gastric juices are working overtime at the thought of it...a cake over a foot tall!! I wouldn't dare make it because we'd have to eat it all! :lol:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi, Shelley,

 

Absolutely -- EVERYONE seems to understand and sympathise with rotator cuff surgery ... it's a rough one and even the big 'tough' guys in our physio therapy location cry and passout from time to time.

 

The hardest part (aside from getting past the physical changes that are/will be coming) was the reaction of my lifetime friends. One took a great interest and spends a good deal of time researching and sharing with me what she learns (wonderful); another has withdrawn somewhat and never wants to talk about it; most have withdrawn almost completely ... friendly, but not interacting like we used to - they're busy a lot recently ... as if they're afraid they'll catch it or I'll die in the middle of a conversation. That's been difficult. I try not to judge them, but have to say my feelings have been hurt. There will be new friends, but gee it's shocking when some of the ones you love so dearly fall away.

 

And you're right -- out of no where will come this person (I think they're angels, actually :) ) who want to hear about it. My tongue gets tied

 

The best part is that I have an incredibly supportive husband who really took that "better or worse, sickness or health" thing seriously. He has his days where he has had enough (who doesn't)? But he is so kind, so considerate, so caring -- yet doesn't treat me like a cripple and still manages to find me "sexy." And my grandkids are amazing ... they notice white fingers or nose sometimes before I do, and bring me a blanket or a pair of gloves, grandson comes to 'spot' during the weight exercises or walks with me, baby will 'rub' (aka smear) lotion onto my face and hands. And then they go casually back to their activities or conversation ... , as though it's all just 'normal.' Imagine that.

 

And how quickly I am learning to reorganize priorities since I've met you all ... laughing with the kids and letting the dishes go, watching the first spring robin with awe, finding beauty in the snow, not minding the snoring of my husband because I'm thankful he's beside me. There are the depressing days, the painful ones where getting out of bed feels impossible and none of the joints work and I can feel the changes that seemed to happen to me over night, that the makeup covers a little less today than it did yesterday, or I forgot the scarf and someone stares horrified at the strange color and texture of my neck and chest. Your positive support and varied input is pulling me out of the fear and enhancing my sense of humor.

 

What a wonderful 'therapy' and comfort this form is. Thank you for beginning it!

SV xx

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Hello Svoss

 

You can post the recipe in the Sclero Kitchen, just have a read of the recipe guidelines first! I think I might be trying the recipe for a certain cake and the frosting!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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