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Guest Sadie

Update on illness

24 posts in this topic

I just wanted to update you on whats going on lately.As you know, I've been in and out of the hospital alot these last few months. Each time I get home, I am getting weaker.

 

I haven't been real honest with you guys about what is really going on with me.

My doctors. have said that I'm now in the final stages of my illness and that they don't know how long I will live. There is nothing more they can do for me.The Sclero is in most my organs now. I no longer can walk since I'm very weak so my folks have to push me in my chair from room to room. Someone always has to be here with me because I require around the clock care. I've had homecare for 3 years. People have been telling my folks that we need to get Hospice. When I was hospitalzed a couple wks ago, I told my folks that I didn't want to be in the hospital anymore and that I wanted to be kepted more comfortable. So last Fri. for the first time, my parents talked with me about Hospice and they lefted it up to me to decide. Last Sat nite, my favorite ex homecare nurse who works for hospice now came over and talked with us for 2 hrs. On Mon- she came over with a lady from hospice. Tues- she came again and had her boss meet us. Wed- I was admitted in hospice care,Thurs-A aide from hospice came to bathe me in my bed. Today- My nurse came and checked me and changed my ostomy bag. She knows me so well since she had been my fidelity nurse for so long. She is wonderful! I will continue my 24/7 tube feedings. I am going to be getting a picc line so that I can get sugar water at nite to help me since I am so weak in the mornings. I am going to keep fighting this illness but without all the pain. They just started me on pain medication and showed my parents how to give me it. I have had Systemic Scleroderma 18 years. now. I was given 3 years to live when they diagnosed my illness in Fall of 1990.

I am at peace! Everyone from Hospice that we've met are so wonderful!! They're like angels!

Sadie

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Sadie,

 

 

 

You have taken my breath away. I'm really sorry. I don't know what to say, other than you truly seems to be at peace with all of this. I am typing with tears in my eyes. I hope that you still have a lot of time ahead of you to enjoy life as best you can.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Oh Sadie ,

 

I, too, have tears running down my face. We are all here for you and, PLEASE, keep us in touch with your happenings when you are strong enough to type. We will all be with you in thoughts daily.

 

Take care, Everyone.

Margaret

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Sadie,

 

Well, from day one you held a special place in my heart, and you always will.

I have been trying to think of the right words but just do not know what to say. I did send you an email earlier though, speaking from my heart. I want you to be happy and pain free.

Please, know that you are loved and we will do anything for you that we can to help you through this. What I hope for is that you get better. Love to you, your furbaby, your family and your Hospice angels.

 

Jenxo

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Hi Sadie,

 

I am so very sorry to hear what you are going through, and that you are in the final stages with scleroderma. I really can't imagine what you have gone through, and are going through.

 

I think it was a wise decision for you to go into hospice. You know, some people actually last longer that way, especially if they get properly medicated for pain (at long last!) and get more attentive care and understanding, as the hospice workers in general are quite wonderful!

 

You know we are always here for you, come what may. And you can take comfort in all the love and comfort that you've shown (and are still showing) to others on Sclero Forums. That is a wonderful and thoughtful legacy that you have created! Love and


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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Dear Suzie:

 

How I love you........you became a fast friend to me. Your emails to me were always a pleasant surprise during the day. I especially loved the bouquet email you sent when I was at my lowest. You are such a beautiful, loving and gentle soul. I value this site for this very reason; to allow me to meet such a wonderful individual where as I would never have had this opportunity.

 

Whenever I think of you, I always picture sunshine in the outline of your face. Your words are always gentle, caring and loving.

 

If you are not aware by now, I am always here for you. IM or email at any hour, I'm always awake at some point, and I want to be there for you my beloved friend.

 

Know I care and I'm there..........

 

Linda


Tru

 

It is what it is...........

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I love you Sadie. You are a very special person. I willkeep you in my thoughts, asking that the doctors be wrong and you'll be feeling better soon.

Rest and get better.

 

Christy


Love makes the world go around!

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Sadie~

 

You dear sweet soul. I am at a loss for words. I saddens me deeply to hear your story but at the same time I am glad you showed those doctors by being such a fighter for so long!

 

I am glad to hear you have such angels around you and that you are at peace. Please keep in touch when you can and take it easy when you can't.

 

You are in my thoughts.

 

Peace and Love,


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Dear Sadie,

 

That, which you have shared with us... brings tears to my eyes. Yet, I've suspected this for awhile now, I'm terribly sad to say.

 

The qualities you have demonstrated, since I've come to know you here... are absolutely remarkable, my friend.

You are selfless, you are loving, caring and very, very special.

 

I am so grateful that your mom and dad have been unwaivering... where you are concerned. I am sending {{{{Loving Hugs}}}} to the three of you.

 

You have a special place in my heart and, as hard as it is to actually read... thank you for sharing this with us, Sadie.

 

Love,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Oh Sadie

 

I don't know what to say either...as I too have tears in my eyes. You are so strong and inspirational to others, I have always admired that in you. I am thankful that you feel at peace and have those hospice angels surrounding you as well as your loving family. I will keep you and your family in my thoughts.


Sending good wishes your way!

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Dear Sweet Sadie,

My love and best wishes are with you and your parents...

 

XO

Bunky

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Hi Sadie,

 

You are always in my thoughts. I hope your scleroderma will slow down and you can enjoy many more years. My mom had gone through hear surgery 32 years ago and doctors had told her, she may live 4-6 years max. My mom enjoyed her life for 24 years more.

 

Please cherish every moment you have!

Love you Sadie!


Kind regards,

 

Kamlesh

 

 

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Dear Sweet Sadie:

 

I am so, so sorry. You have always been there for everyone from the first time you were on this site. You give of yourself even though you are suffering and struggling. I too hope that hospice will bring you comfort and you sound like you are at peace with what is happening. Please know that there are so many people who care about you and I am one of them. Please fight this with all that you have and I will continue to hope that this is a setback and that maybe they are wrong and you will fight through it and win.

 

Warm, gentle and loving hugs to you my friend,

 

Peggy

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Thank you all for your kind words to me! You guys are like family to me! Your messages brought tears to my eyes! You guys are so special!!

Sadie

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Dear Sadie,

You are an extremely stong person and a person that I admire for your strength and clarity. I wish only the best for you. You find the joy in life, and I send you joyous days. May your every day be filled with comfort and joy.

Yours,

Annie N.

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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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