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Biomarker for Diffuse Scleroderma skin has been discovered!


My first few weeks of Hospice care


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23 replies to this topic

#1 Guest_Sadie_*

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Posted 19 June 2008 - 11:36 AM

Hi Everyone, Sheryl thought it would be nice if I could share with you all about whats going on with my health, my thoughts and etc. Every once and a while, I am going to give you updates on whats going on.

Its been 2 weeks now since I started having Hospice care. The idea of having Hospice care was hard at first.
I didn't know what to think. Well, that attitude changed fast! After they put me on a strong pain medication, it killed all my pain! I never
realised how bad my internal pain was till I started on that drug and now all that pain has gone away. Also, Hospice decided that I needed a picc line for sugar-water at nitetime so that I don't get so weak during nighttime and mornings.
That has helped me too! I am going to keep fighting this illness but without all the pain!

I will keep you updated on everything that goes on. Next post, I will share more with you about my scleroderma and how it has effected my body. Sometime, I will do a post on Hospice. At any time, feel free to ask me any questions.

Sadie

#2 truman

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Posted 19 June 2008 - 12:17 PM

Oh Suzie:

What a beautiful diary you could write. I'm so glad you're pain free and enjoying life easier. As buddies, you know I'm on line constantly, so just keep puttering at those keys and I'm there sweetie.

I had a good visit at the wound care center today and the wound opening as gotten smaller. Next is an oxygen tank similar to an MRI tank. Got me a little nervous with the "what could" happen scenarios, but may consider it.

Keep up the good work girlfriend......love you


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

#3 Shelley Ensz

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Posted 19 June 2008 - 12:41 PM

Hi Sadie,

Thank you for updating us. You know we are all concerned about you! You aren't the first person I've heard of who has improved on hospice care. Sometimes when they give proper pain relief (at long last!) and tubal feeding that can literally turn things right around. And at the very least, it makes you happier and more comfortable.

Please let us know more about hospice, too. Many people do not know what it is, nor how pleasant and valuable it can be.
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.

#4 Lucy

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Posted 19 June 2008 - 12:59 PM

Hi Sadie,
It was wonderful to hear from you and to hear you so positive.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#5 Sheryl

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Posted 19 June 2008 - 01:03 PM

Thank you Suzi for updating us on your health. I am happy you are living without so much pain. Even if you are only getting enough pain medication to take the biggest edge off of your pain then that is awesome. I really do want you to give us any of your experiences that you feel like talking to us about. That way others can ask questions and also learn from your experiences. You are on a feeding tube and now also have the picc line for glucose or sugar water? I am not understanding why you would have both. When you can, would you answer that for me?
Strength and Warmth,
Sheryl

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#6 nan

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Posted 19 June 2008 - 01:43 PM

Sadie,
What a wonderful outlook you have on your present situation! I am so happy that your pain has lessened. I am sending good vibes your way.
Take care,
Nan

#7 LisaBulman

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Posted 19 June 2008 - 02:37 PM

Sadie,
Thank you for sharing with us. I think about you all the time. I'm glad to hear you are now pain free! At least you are getting some real relief. Please keep fighting...and posting!

Hugs,
Lisa
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#8 Margaret

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Posted 19 June 2008 - 02:40 PM

Hi Sadie ,

You sound so upbeat and cheerful.....gotta love them pain meds!!! Hasn't it been proven that once the pain is gone, the mind/body can work better to repair itself? Sure hope you're around for a long time. You are in my thoughts each morning and night.

Take care, Everyone.
Margaret

#9 debonair susie

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Posted 19 June 2008 - 04:00 PM

Dear Sadie,

Please take care of yourself, Sweetie... You are on my mind so much, wondering how you are.

I am relieved that you have Hospice care, which must help you feel much more comfortable, as well as your folks.

As far as the pain is concerned... I'm glad that you are not experiencing it. It's amazing how you've adapted to the pain you've had.

It is so generous of you to share your experiences with us, dear friend.

Sending you loving hugs,
Susie
Special Hugs,

Susie Kraft
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#10 Karenlee

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Posted 20 June 2008 - 01:55 AM

Hi Suzie girl! So glad to hear you are pain free and keeping us updated as much as you can. You know you can email me anytime to chat.
As Margaret said, the body has a better time at healing while not having to adapt to pain, so I am so glad the pain medication is bringing you releif. You are my hero!!

Big hugs!!!!
Karen

#11 Peggy

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Posted 20 June 2008 - 05:38 AM

Hi Suzie:

Thank you so much for the update! I have thought about you so much and I am always hoping that you are free of pain and its good to know that you are now. I hope that you continue to feel better now that you are pain free and getting nutrients and rest.

I want to say a big "thank you" in advance for being willing to share what you are going through. I know that this is a part of the disease that I think all of us worry and wonder about and to know that you are willing to share it even though you are going through it is absolutely wonderful. You are a great lady with a lot of people who think about you, who care about you, who are rooting for you, and are here for you.

Warm hugs,

Peggy

#12 JJ-Knitter

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Posted 20 June 2008 - 08:44 AM

Dear Sadie,

Thank you, thank you for sharing! Everything you post is helpful to someone and you take a lot of the fright out of things. Keep fighting and we'll all be cheering you on to flunk hospice.

Love and best wishes,

JJ

#13 Sweet

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Posted 20 June 2008 - 08:48 AM

Hello My Special Sadie!!



Thank you so much for taking the time and strength I know it cost you post for us. You truly are a special one. I'm thrilled to hear of the positive outcomes from your hospice care. I am also very touched by your positive thoughts, and your caring thoughts, that I see you share with others.



You are a fighter Love, keep it up!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#14 Snowbird

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Posted 20 June 2008 - 09:58 AM

Hi Sadie

It's great to hear from you. I'm so glad that you are getting some relief from the medications and that your hospice surroundings are full of love. You are always so inspirational for us!! :) :)

Take care and keep us updated whenever you can.
Sending good wishes your way!

#15 Clementine

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Posted 20 June 2008 - 10:34 AM

I love you Suz! Have a WII weekend! :)

#16 smac0719

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Posted 21 June 2008 - 03:31 PM

Sadie you are such an inspiration to me! Thank you for the updates and you continue to be in my thoughts. I'm glad you are experiencing relief from the pain. That in and of itself can lift spirits tremendously.
I may have Scleroderma, but Scleroderma doesn't have me!

#17 Sam

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Posted 23 June 2008 - 04:15 AM

Suzie I was just thinking about you too. I had posted a message to you. Can you email me you number so I can call you. I miss place the number you gave me a couple of weeks ago. I'm glad to hear from you though. Sam
Sam

#18 summer

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Posted 23 June 2008 - 01:38 PM

Hi Sadie,
I am so glad that you are feeling so much better and pain free and also happy to know that you are feeling more settled in your new surroundings.

Please know that we all care for you, feel free to PM me anytime, even if it is to chat online or if you are feeling a little down or lonely.

Sending positive thoughts your way

Best wishes
Celia

#19 janey

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Posted 23 June 2008 - 03:29 PM

Sadie,
Ditto to all the previous comments. Your attitude is amazing considering everything you are going through. What an inspiration you are!!!! I'm so glad that hospice has been so been beneficial - physically as well as emotionally. Having life without pain probably makes you feel like a new woman. I hope things continue to improve Sweetie.

Big Hugs,
Janey Willis
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#20 YFChoice

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Posted 23 June 2008 - 04:36 PM

Sadie.......it would be amazing if you could bottle up your strength and attitude and let everyone have a taste.......it'd make the world a better place.

YFChoice
~ You have to think anyway.....you might as well think big