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Freaking out today


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#1 Eos

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Posted 08 May 2009 - 03:05 PM

Went to local grocery store today. And there she was.... a tiny skinny lady with a bald spot on her head, 2 sclerodactyly fingers on her right hand, sclero mouth (no lips, won't close) and a lot of skin involvement on her neck area, which seemed to be itchy. I tried to tell myself she had eczema... until I spotted the fingers. I really really tried not to stare. I was thinking this is gonna be me! There is another person in this town like me!! Of course I was too freaked out to go and talk to her (besides the fact 1. I am shy 2. I am antisocial and 3. I am antisocial and 4. reaaaaaally shy and awkward). Really she'd have thought I was some kind of crazy person anyway: "Oh, hi -- you got sclero?? Me too -- wanna exchange phone numbers?" Nah! She'd have called the store security!!

Anyway I do not appreciate reality checks like that!!
Anyone had a similar experience?

#2 jefa

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Posted 08 May 2009 - 05:32 PM

Hi, eos. You really should have said, Hello. She might have been one of us. :D

I have not had the same experience, but I have had many reality checks to do with signs of aging. Like when did people start giving up their seats to me on the bus? Or when a tiny silver-haired women, waved me in front of her getting onto the bus.
Warm wishes,
Jefa

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#3 living linda

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Posted 09 May 2009 - 02:14 AM

I am so glad you addressed this situation! I pulled through the bakery drive-thru, placed my order, was told to wait a minute, then the manager appears. Hey- I noticed you when you drove thru the line. You have scleroderma don't you? Well, yes, but how did you know Am I that noticeable in public? I drove home and could have cried all day. You know why I didn't? I have very few tears. The manager was so sweet and meant no harm. Sometimes it just hits me out of nowhere. I will be feeling so like my old self and I will see a photo of myself. Where did I go? I had to go to a walk in clinic while in the Tacoma area last fall. The doctor walked in and said," so, how long have you had scleroderma?" I went to a dermatologist and she walked in and said, "you have fish mouth". What!! That's what she called the lines above my lips. I just love this forum. I would love to go to a convention and meet you all in person. I will be the shy girl in the corner back table with a fish mouth and patriotic fingers. (red, white, and blue).

#4 Jeannie McClelland

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Posted 09 May 2009 - 04:03 AM

Sweeties,

It's going to be awfully hard to recognize each other at our convention if the only thing we have to go by is red/white/blue fingers and a fish mouth~

Just so you'll recognize me, I'll be the woman with red-and-gray striped hair, wearing a magenta t-shirt, jeans, and orange clogs with turquoise blue socks! I'm going to sit in the brightest light I can find, I'll have my knitting with me, and I intend to be laughing with joy at seeing you all at last!

Just think what good friends we all are. We like each other for what's inside, not the package we come in.

Big hugs,
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#5 mando621

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Posted 11 May 2009 - 03:18 AM

Jeannie I'll join you in the section of mismatched outfits. I was looking at myself the other day and here it goes.... purple jacket (wind breaker), green sweater, blue jeans, red socks, green boots (I was out in the rain), yellow turtle neck....

I also have the striped red and white hair (alas, mostly white on top).

I've never been much for fashion, yet comfort is going way ahead of fashion any day now.

I found someone in my town with morphea, and she knows of another person in the area with some form of sclero. We found each other through a forum where we mentioned where we are from. Just saying hi to someone can really be helpful.

Mando.

#6 Amanda Thorpe

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Posted 11 May 2009 - 09:30 AM

Hello All

If I'd seen someone else with sclero during my first 6 months I'd have jumped on them. Well not jump so much as ask someone to throw me in the others direction! I was desperate to meet others with sclero.

In the beginning of the disease I decided to de-sensitise myself so my sister and I (at the time she was waiting a possible lupus diagnosis) googled anything and everything with sclero or lupus in it. Whoever found the most gross picture or symptom won. I also read every personal story on every website I could find. Having been blindsided by the sclero diagnosis my theory was to "know your enemy" and be ready for anything! :lol:

Mind you I do often wonder how strangers view me when they see my hands and arms and watch me walk. I might ask one someday. If I saw someone else with sclero I'd have to go up to them and wave my hands at them. How awful if they then said "Sclero what?! What are you talking about?! :blink:

Take care

Amanda
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#7 mando621

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Posted 19 May 2009 - 10:09 AM

Hi everyone,

This topic is very much on my mind today, I was at a meeting at school and it was quite cold in the room. The person sitting one spot away from me was in the process of turning purple. I offered my jacket to her, but she said she was okay.

She had the signs of scleroderma on her face, shiny tight skin, small nose, no top lip. Her hands and fingers were showing signs of sclerodactyly.

I really wanted to say something, but I don't know her. I also feel that it would be horrible for someone to come up to me and ask me if I had something like scleroderma if I didn't know.

I have her name, so I'm going to see if I can somehow get in touch with her at a later time. I was so wishing that I could say something and possibly get together sometime.

Does anyone have suggestions on how to break the ice in this situation?

Mando.

#8 Shelley Ensz

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Posted 20 May 2009 - 04:57 AM

This is an interesting topic! So, we are afraid to make contact with our fellow sclerodermites, if/when we notice each other in public?

Well, yes, even I have encountered this. I had a business associate who heard of my work with scleroderma and said she had a "best friend" with scleroderma. At the time, some sixth sense made me wonder if she was being entirely forthcoming.

A few months later, I ran into her at a banquet, and had an oh-my-goodness-she-has-scleroderma moment by the clear changes in her appearance in the interim. But, I was left entirely tongue tied as she had passed it off as her "best friend" having it, and I figured that among business associates she may not have wanted the word out that she was sick in any way.

So I had to sidestep the issue, and our paths have not crossed since then. But I have always felt some angst over whether or not I did her any favors by not saying anything, even though I'd be hard put with exactly what to say, given the circumstances.

And several times I've noticed people in public who might have scleroderma (who I didn't already know) and felt stumped on how to make an approach. Perhaps, since it could be either rude or wrong to exclaim they have scleroderma too, we could think in terms of making contact by complimenting them on something -- a nice hairdo, pretty earrings, a lovely color they have on, anything that is sincere praise?

Then perhaps a comment that might lead to further conversation such as, oh, dear, it's a bit chilly isn't? I have scleroderma, so just stay tuned to watch me turn colors now; when it is the least bit chilly my fingers turn dead white and it takes forever to warm them up!

That might open the door for a "me too!" or we might get the old brush off. I don't know. This really needs more thought; we need to be ready for each other, and there for each other, when opportunity strikes!
Warm Hugs,

Shelley Ensz
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