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Elehos

Reinventing Ourselves

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This is actually for anyone that wants to read, but it's funny how one post gets you thinking. Sharon was asking for recipes or cooking suggestions, and I pulled out a book that I hadn't looked through for a number of years now for some ideas, and it really hit how I've changed over the past decade. It's an incredible book on herbs and spices, not just culinary, but for gift ideas, gardening, medicinal, etc., and it's almost unimaginable how much of myself has been lost. Not that all of the past can be regained since the physical changes prevent the majority of former activities (and I had loads of them), but it's time to reassess and find new interests and passions. Obviously, that can change quickly, sometimes overnight, but it's a great feeling to be thinking that way again and see where it can lead. Most of the past year has been little more than going half nuts trying to convince a rheumatologist that they really do have room for just one more patient, then rounding up paperwork just to have them say "no." From now on, it's onward and upward before couch-bound hits! These flares have yet to learn that I've always hit back, and have a mean left hook. Just wanted to throw that out there, and hope that anyone struggling in this area can find yourselves again, even if it's a new self.

 

Hugs and best wishes to all,

 

Elehos

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I so relate to what you are saying

3 years ago I was a girl with ambition waiting for a baby to be conceive, and it was all down hill from their or so it seems at times.

My whole family has had to learn and adapt to the changes in diet, mood, ability and energy levels.

It has meant that my dreams of working with children in childcare are on the back burner for now as are my love of cooking and bushwalking.

But from this I too am hitting back and determined that enough is enough I want to find things that I can do and makes sure I make the best memories while I can.

See this has made me realise that the busyness that we call life meant that I took so many things for granted now it is time to stop smell the roses and rejoice in all the things that are good in my life.


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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Excellent post, Elehos. Life is largely what we make of it. If you get a chance, you may find the news article posted by Janey quite interesting. Skip the abstract and read the full article: The Common-sense Model Of Self-regulation Of Health And Illness


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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How true!! I have had many people say to me how can you be so positive and my response is what will being negative do for me? It is very easy to get lost and depressed when dealing with all of these health issues. Thanks to the incredible support from my family I am able to look for the good in things and appreciate the little things. I get excited that I wake up each morning and when I can get out of bed, that is an added bonus. Scleroderma has made me realize that I was missing out on many beautiful aspects of life because I was always too busy! Slowing down has made me reaquaint myself with that.

Have a super day!

Nan

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Thanks for posting Elhos!

 

It is true, be positive, fight back, and no you are not the same person you were before you were diagnosed and you are not the same person you were yesterday. Find yourself again, do what you love and love what you do even if you have obstacles in the way.

 

HUgs,

Lisa


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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Hi Y'all,

 

It has been decades of reinvention, but this past year had me stalled, mainly because of unrelenting flares, unwilling rheumies, then a med that made me temporarily psycho, but getting out from under that certainly made me come out stronger. Perhaps it's a coping mechanism, but I tend to completely forget whatever was and dwell only in the present, but that can be either good or bad. Remembering is bad if you continually long for what can no longer be, but the inward enthusiasm that was there before illness, or before illness became your conjoined twin, is the part that needs to be remembered always. It's impossible to become bored with an active mind, and even though the reality of the goals takes much longer than before, I'm learning to say "It's ok to be slow."

 

Hi nan,

 

Oh, I get psyched just from being able to get out of bed and cross the room, too! Sometimes I sit and think, "What else could I lose and wish I had back?," and take into account what is still possible. Remember the song Moonshadow? As a kid it sounded stupid, but makes more sense these days!

 

Thanks to everyone, and best of wishes to you,

 

Elehos

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