barefut

The Other Woman

15 posts in this topic

Well, I finally found the other woman with scleroderma in my small town. Three different people have told me about her but none could recall her name. I have been looking for her for about a year. Even tried to flush her out with a personal ad.

 

I had an oportunity to mention scleroderma to my favorite checker at the grocery store and she took my name and number and gave it to the other woman when she came through her line.

 

She was diagnosed 7 years ago, also has diffuse and is on a kidney transplant list. I spoke with her on the phone and will meet her at my coffee shop on Thursday. I am looking forward to it.

 

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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What a thrill, Barefut! I am so glad you will be able to meet her, at long last.

 

Please give her an extra warm hug, just from me!


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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So glad you found 'the other woman'. It is really nice to have someone to connect with, because no one can understand unless they have walked in your shoes. That is the great thing about this forum, people here really understand.

Have fun with your meeting.

~whirlway

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Barefut, that's great! I can't wait to hear how the coffee date goes. Maybe this is the beginning of a beautiful friendship.

 

Whirlway's message really hit home. I think I am a terms with having Scleroderma but what really bothers me is that suddenly I am in this whole new class. The class where no one will ever fully understand me anymore, unless they have Scleroderma. Not that I want my husband to run out and get Scleroderma, but it would be nice if he, of all people, could totally understand.

 

Blah,

Jennifer

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Hello,

 

I am with you Jen, I read whirlaway's post and couldn't help but feel that longing to just be normal. While I am walking down the long hospital corridor, I feel anything but normal. I feel like...well here I am....again...getting another test...what will they find this time, how can this make me feel better tomorrow.

 

I think we all fight just a little to feel better 'tomorrow', to feel normal and not to have Scleroderma in the back of our minds.

 

And then I read all of your posts and I feel a little hope come from each one of you and it gives me strength to put on my "I feel normal face" and go to work, to play with my kids and to lend a hand to others who need help even more than I do. So thank you all for your commitment to lift up my spirit each and every day.

 

I think that it is truly our Scleroderma friends that we can relate to, who understand what each day is like, that keep us going. To make the short story long, Barefut I am so glad that you met someone else in your town to share with.


*WestCoast*

 

********

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Barefut,

That sounds great! I hope the coffee meeting is fun. Let us know how it goes.

Nan

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Wouldn't it be good if we could start a contact each other page then we could find out if anyone lived close by -- what great support that would be!

Of course I realise the privacy issue here and that could be a problem especially these days, and I'm not accusing anyone of being psycho so please, no malice intended.

I know first hand the importance of being able to talk to someone in the same position as yourself. I'm fortunate enough to attend a support group every month and as well as being able to discuss our worries with each other, we also have a great group with a great sense of humour. I think it also makes each one of us realise that our own condition isn't that bad after all when you consider others with sclero.

I hope your meeting will be the first of many and you both feel solice in each other's company.

 

Best wishes as always

Barbs xxx

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All of you have such great input on this subject. I guess this group is probably the closest I am going to get to a support group and I couldn't ask for a better one. Anyway, it is nice for those of you who do have the personal contact with other sufferers. As for support from significant others, that's a whole 'nuther subject, ain't it? ;)


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Well I met "the other woman" today. I'll call her Jane. She was wonderful. Funny and inspiring.

 

She told me that she knows someone with sclero who's grandmother lived into her 90's....with diffuse!

 

She reminded me a bit of americanmike with her optimism and a bit of Barbs with her humor.

 

She referred to her medications (40 pills/day) as her pharmeceutical food group.

 

Her sclero came on fast. Within 3 months of her diagnosis she was having kidney failure. She said she has lots of "ologists" and credits her nephrologist with saving her life twice.

 

I am so glad to have met her.

 

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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pharmeceutical food group! hahhahhaha! It is so true.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Barefut,

It sounds like you had a fun meeting. I hope you will be able to stay in touch with her. What a great support to have!

Nan

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barefut,

 

I'm so glad for you both... It's so great having this forum as somewhere we can go and talk with each other.Yet, to have someone in front of you...someone you can look at... it's like having a real sister :rolleyes: !

I hope you are both able to meet often with each other.

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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