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emmie

A Little About Emmie

12 posts in this topic

Hi friends,

 

I've been posting for some time and yet, I've put off doing this; no clue why! First off, this forum is truly a great place for people with scleroderma and/or their loved ones; you can't beat the people here who really support each other. It is one of the silver linings in the "cloud". The ISN site is, in my opinion, top notch with all the resources they offer.

 

I started my scleroderma journey with raynauds in 1997 or so with an extremely severe attack as my husband and I were cross country skiing. Once you are out in the woods and the attack begins, it takes the same amount of time to get back to the car. Being clueless as to what was going on, I thought my hands were going to fall off! By 2002 the hand swelling was in full swing and I had 2 areas of skin hardening on my face. However, I put off telling my primary care physician about this until 2004 when he sent me to the rheumatologist. Presto: you have limited sclero. I have some mild GI problems; I just got a good report that cellcept use for 2 years has cleared up mild ILD; the skin on my hands and face has softened; my mouth is still shrinking. I have an overlap of lupus; Hashimoto's thyroid disease; Hashimoto's encephalopathy (a very rare neurological complication of the thyroid disease); seizures (related to the encephalopathy); degenerative disc disease; let's stop there, why dwell on this stuff.

 

The good news: I am 52 and have found that liberating! My husband and I have been married for almost 33 years. Yup we were babies when we got married. And then we had 2 baby daughters of our own. Our oldest will be 30 this year and has a 3 year old son; daughter #2 is 27 and has a 15 month old daughter. Being grandparents is turning out to be our favorite volunteer career! My husband and daughters are very supportive, helpful and understanding. (I'm the one who had the hardest time adjusting to not being the super achiever/get it all done/always organized person; in fact, I haven't seen her for a few years now!) One of my sisters is my best friend. She is super understanding, great fun and also a good driver. I don't drive except to a couple very nearby; some of my problems from the encephalopathy make that kind of dangerous for me and the other folks who might be out there when I am, so between them all I make it to my appointments and shopping, etc.

 

Up until this past year, I was an assistant prekindergarten teacher. I also develooped and coordinated an education program for the parents of the kids in our at risk program. I can't tell you how much I miss the kids and their parents. I feel so fortunate to have been able to have done work that I enjoyed doing and that I felt made a difference. Unfortunately, it's pretty high energy, brain draining, involved lots of out of the classroom hours....all things that I can't manage any more. So, I have applied for SSDI, been denied twice and next I'll have a hearing. Hopefully, better results at this level.

 

This is more than enough information. Maybe this is why I never got around to doing this. I knew it would take waaaaay to long! If you read all of this, you should get a prize! :P

 

xoxo emmie

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Hi, Emmie. Thanks so much for taking the time to do this. I think the stories are one of the best parts of the site, and especially the ones on the forum from the people we have come to think of us friends. You can read all the medical articles in the world, but hearing how each persons disease progresses and how they manage to cope with it in busy lives makes the whole thing a bit easier to take on board.

 

I am pleased that you have such a solid support structure among your family and friends, at least for the physical needs. I think the hardeest part, however, is finding ways to keep mentally active when you are limited physically. I hope you continue to find ways to do this now that you have 'retired' from your former vocation.


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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Hi Emmie,

 

It's so nice to hear your story. You set a wonderful example of adjusting and overcoming.

 

And I did read all of it. So what is my prize? I'm thinking, maybe, maid service for a year, or a Rolls Royce? Ante up! All of us who read your story should get our pick of our own favorite prizes.

 

Oh, wait, I don't need maid service, as I already have some robots. And I really don't want a Rolls Royce, come to think of it. It's a little uppity for my simplified rustic lifestyle. For my prize, I'll settle for just having you post some more, okay?


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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Hi Emmie,

Thanks for posting! If it wasn't for great people like you, who post and share themselves with everyone else, this forum wouldn't be what it is today. :)

 

Good luck with your SSDI, fingers crossed, (well not really crossed as I can't do that anymore, but you get the idea)!

 

Hugs,

Lisa

 

PS I would like some warm chocalte chip cookies with some ice cream on the side as my prize!!!


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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Emmie,

 

Thanks so much for sharing. I read your whole post. I send good vibes your way for disability.

 

Take Care!

 

Nan

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Oh for Pete's sake! I meant to put this on the Getting to Know You thread! See, here's a manifestation of the encephalopathy (I blame all my goofs on that now :-)

 

Is there a way of moving this over there? If so, I think there should be a fabulous Grand Prize for the person(s) who know how to do that.

 

And thank you Jeffa, Shelley, Lisa and Sweet for your sweet (and funny) replies. I love to laugh and goof around. I think releasing endorphins is a terrific part of staying mentally healthy--that and remembering my antidepressant! Yes, I am finally comfortable with admitting that my diseases have made that a necessity for me! Funny how one can adapt.

 

xoxo emmie

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I'd hate to move it just now, because it is a good thread. However, if you add a blankish post to the Getting to Know You thread, I can copy the text from this one into it. Then it will still be there when this topic eventually falls off the main page.

(anything for a prize) :)


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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Jefa,

 

Thank you for coming to my rescue. You are a master mind. I think your prize should be a beautiful princess tiara! No, better yet, a magic wand. That is what I always wish for so I think everyone else would want one too!

 

xoxo emmie

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Thanks for the wand - I used it to put your original post in the Getting to Know You thread. I am sure it will be useful for many other things. Too bad it is only a forum wand, or I would wave all the pain away for everyone.


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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Hi Emmie! Be persistent on the Social Security thing, I, too was denied ever how many times it takes before you get a hearing. Once I had my hearing in October of 2005, I didn't get a notice of approval until February 2006 ( I first applied in June 2004) but the important thing is I finally did get approved, of course that also took a lawyer, but she was well worth it to navigate the frustrating red tape. I am 49 and my 28th wedding anniversary is this December, so I was young too, but you know what? My husband and I met when he was 17 and I was 14 and we have been together since. I have a 22 year old son (engaged and still living at home) and a 17 year old daughter who will be a senior in high school this year. I also have an 8 year old Jack Russell (Rocky) and a year old Australian Shepherd (Zoe).

 

I honestly don't know what I would do without the support of my family. Your and my marriage seems to be the dinosaurs of our time, (sorry, I do not mean to offend anyone who's had a bad marriage, so PLEASE do not be offended). I try to look at every day as a good day, when you consider the alternative! Hang in there and keep at the Feds!!!! Good luck, you know you have all of us pulling for you!


Peace :)

Barbara aka relicmom1

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Hi Barbara aka relicmom 1!

 

Not only is my marriage from the pliestiscine age (I might just be making that "age" up), but there are days I feel like a dinosaur!

 

And you can bet I'm not letting the Feds off the hook too easily. I've got an attorney; there is no way I could do the paperwork. I think that's part of their plan--they make it as difficult as possible so you give up.

 

Hope things are going well for you these days.

 

xoxo emmie

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