Guest Sadie

Update on illness

24 posts in this topic

Hey, Suzi-Q. Thanks for sharing all of this with us. It can't have been an easy decision to make. I am relieved that everything has been set up in a way that makes things easier for you and your parents. As you can see from all of these caring messages, you are surrounded by friends. Thank you for touching us and helping us to understand more about your experience. We are here for you in all the ways we can be and keeping good thoughts for you. Hugs, sweetie.


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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Sadie,

 

I haven't been an "involved" member for long, but I too have felt your kindness and strength through your words. As I have read through numerous posts, you are one that I look for as I know if nothing else, you will have an uplifting and encouraging word to share. Your strength is evident through your post. I am so glad that you seem to be at peace, have a wonderful family support system have found so many friends here. You and your family will be in my daily thoughts. I too hope that with round the clock care that you will have more enjoyable days. You inspire me!

 

Peace and blessings!!


I may have Scleroderma, but Scleroderma doesn't have me!

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Thanks Sadie for letting others know what is really going on with you and this ugly illness. It is very hard to put up pretenses. You needed to let others know what is going on in your life so that they can send uplifting words to raise your spirits. You did the right thing. It is very hard to send responses to others when we really don't know what that person is really feeling or how serious things have become for them. None of us realized how bad Sherrill was. We didn't get to send her uplifting words. We didn't get to help her make peace with herself or say our good byes. Everyone needs kind words and loving thoughts before, and during our illnesses. I sure hope hospice and your favorite nurse take exceptional care of you. You deserve the best. You will be in my thoughts even when you aren't writting to me. I have enjoyed every letter and post you have written. I hope you continue to write to me when you feel like venting or just need a sounding board. Very soft hugs are being sent your way.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Sadie

 

I do not know what to say to you except that I am thinking of you & your family and hope that all these message of support show you just how much we all care.

 

Thinking of you

 

Jensue

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Sadie,

I always love to read your post - they are always kind and gentle in our tough world of SD, my heart is broken for you and for all of us who have had our lives made a little bit better by getting to know you and share with you.

I will be thinking of you Love Lucy


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Dear Sadie,

Thank you for sharing with us what you are going through. Just remember, no one person on this earth knows when on how we will leave. We have no promise, no assurance of our next breath. Each moment in our lives is a small miracle, and I think we, with this nasty disease, are aware of it more acutely. Also keep in mind, doctors can be so wrong, they are only human too. As a nurse in a small hospital I have taken care of patients that have been on hospice for years, and some have even been discharged from the program because they improved so much! It sound as though you are surrounded by loving, caring people that will do their best to take care of you. Stay positive, think loving thoughts and by all means, keep yourself comfortable and warm. Please keep us posted as you are able. I'm so glad you are at peace!

Wishing you better days ahead,

Dianna

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Hi Sadie,

Thanks for sharing with us the situation that you are now in, I agree with Dianna about not knowing when our time is up. You are lucky that you have family that support you in your time of need.

 

Try and think positive thoughts, doctors have been known to get things wrong all of the time. Just because they have given you a time limit when they think you might not live any longer, doesn't mean it is true. You seem to be at peace, regardless of what happens, if it was me, I wouldn't accept what the doctors say about time limits. I would want to fight even longer to prove them wrong.

 

Anyway Sadie, please know that we are all here for you and care about you, you will be in my thoughts every day.

 

Love Celia

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Hello Sadie,

 

I have not been posting lately, but have been a member for quite a while and always check in several times weekly. Your comments to others have always struck me as compassionate and understanding.

 

I would just like to offer you some compassion in return. Obviously you know scleroderma inside out after 18 years. I don't think it knows you, though. I don't think SSc expected to invade your body so extensively and cause you such physical suffering but not break your spirit. In spite of your pain you are still able to offer others kindness. In that way,you have beat scleroderma and that counts for so much.

 

I am sure you are already feeling much better with your choice to be cared for through hospice. You will benefit from the special care you receive and just as important, they will all benefit by knowing you. All my well wishes are with you. I look forward to reading more from you as you feel able. Thinking of you and sending gentle hugs,

 

emmie

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Sadie,

 

I am so sorry to hear about all of this. I am just amazed with what grace, it comes through the words you type. Stay strong and all my love to you and your family.

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