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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 whirlway

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Posted 03 August 2007 - 04:35 AM

Haven't been around a 'puter lately, due to the fact that my sis has been in the hospital since a week ago Tues. She had a grand mal seizure and was rushed to the hospital and they ended up doing brain surgery after they got her stabilized. I drove about 400 miles so I could be with her during the surgery, etc. Her recovery has been very slow, she is also a diabetic. The doctors said she had a lot of fluid on her brain, so they installed a shunt so it could drain properly. The doctors also said it was a good thing she had the sizure, due to so much fluid build-up on her brain, and that she would maybe have lasted a couple of weeks longer. Yesterday, she had another seizure. It has been a long haul, with not very much good news. She was finally moved from CCU late last night, (the hospital needed that bed), so now she isn't getting as good a care as she was. I have been spending every day by her bedside, she is all the family I have left. The really hard thing about this is that my brother had exactly the same thing happen to him and the brain surgery was the beginning of the end for him. He only lived a couple of years after that.
So, think good thoughts for both of us, especially Jodi, my baby sis. I need some good thoughts also, as I am starting to wear down. Sitting in the hospital is starting to take its toll.
Thanks for listening.
~whirlway


#2 Sweet

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Posted 03 August 2007 - 04:48 AM

Hey girl,

As you already know, my thoughts are with you and your family. I certainly hope things settle down for all soon.

Much love!
Warm and gentle hugs,

Pamela
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#3 WestCoast1

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Posted 03 August 2007 - 06:11 AM

whirlway~
Your little sister is fortunate to have you by her side. My thoughts are with you two. I wish her all the best of luck as she recovers.
*WestCoast*

********

#4 bookworm

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Posted 03 August 2007 - 07:09 AM

Whirlway,

I'm sorry your sister is so sick. She's lucky to have you standing by. I know how hard it is to keep a hospital vigil and I will be thinking of you in the coming days! I hope your sister makes an amazing and rapid recovery!



Mary in Texas

#5 Clementine

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Posted 03 August 2007 - 09:34 AM

Whirlway,
Bless you and your family. I am very sorry to hear your sister is ill. I hope she recovers soon.
Thinking of you,
Jennifer

#6 debonair susie

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Posted 03 August 2007 - 11:55 AM

Whirlway,

I am so sorry to read about your little sis... I have no doubt she feels the love as stay near.
I will keep you both close in thought. Please try to rest and take care of yourself?

Soft Hugs,
Susie
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#7 Sherion

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Posted 03 August 2007 - 01:47 PM

Whirlway,
I am so sorry about your sister! It's such a hard thing to watch a loved one go through so much. It's hard enough to be with them all the time when you are healthy, but when you also have medical problems, the stress can be overwhelming. Just know that you and your sister are in my heart and thoughts.

Sherion

#8 nan

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Posted 03 August 2007 - 02:49 PM

I am so sorry. Watching someone you love in the hospital while they are so sick is so draining. I hope that things will settle down soon. I send good vibes your way.
Nan

#9 Alexandra

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Posted 03 August 2007 - 05:29 PM

Dearest Whirlway
I am thinking of you and your darling sister.I hope you manage to get a little rest too.I shall keep you both in my thoughts .
Alexandra

#10 summer

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Posted 03 August 2007 - 10:23 PM

Dear Whirlway,
I'm sorry to hear about your sister, you are both in my thoughts. Try and take one day at a time and remain positive during this trying time, she is going to need your strength at this time.

Take care
Celia

#11 LisaBulman

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Posted 04 August 2007 - 04:00 AM

Whirlaway,
My thoughts are with you and your sister at this time. She is very lucky to have family like you, but please do take a break even if it is only for a few hours and get some rest. You need to take care of yourself too.

Thinking of you,

Lisa
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#12 Sheryl

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Posted 04 August 2007 - 07:24 AM

I hope Jodi is doing better. Whirlway, doesn't she have a husband or children? if it is all on you then you will need to pace yourself to save on your own strength. My thoughts are will you. The two of you may need to move closer to each other for support purposes in the future. Sheryl
Strength and Warmth,
Sheryl

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#13 susie54

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Posted 04 August 2007 - 11:43 AM

Whirlway,

So sorry to hear of your sister's surgery and seizures. What alot to go through. I know you are scared . Try to take care of yourself through this. All the stress could really flare things up. Susie54

#14 emmie

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Posted 04 August 2007 - 03:35 PM

Whirlway,

Thinking of you and your sister today. So very sorry that she is going through all of this. I'm sure she finds comfort in you being with her. Be sure to rest every chance you get and try to eat as healthy as possible. It's really hard in these situations, but so important. I'll keep the positive thoughts going and send energy your way, too.

xoxo emmie

#15 jefa

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Posted 04 August 2007 - 08:25 PM

Hugs to you, whirlway. I will be keeping you and your sister in my thoughts.
Warm wishes,
Jefa

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#16 whirlway

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Posted 05 August 2007 - 11:35 PM

Thank you all, for your support. I got home late last night, finally felt like I could leave Jodi. Sheryl, Jodi doesn't have a husband or children and we were planning a move so she could be closer and then she had the seizure. So, I am her main support.
I knew I needed to come home, just to see my family, hubby and kids. I did get to see my other kids that live on that side of the state, but in a bad situation (hospital setting).
Jodi is on an insulin pump and does very well with it, but no one in the hospital seems to understand it. Several doctors have asked her to turn it off so they can monitor her diabetes w/ just shots. She told them no and for them to try to turn off their hearts to see how long they would live. The pump takes the place of her pancreas, which doesn't work in her case. We finally got an endocrinologist in there Sat. that really seemed to understand what was going on and got the nurses and other doctors to get the big picture. That was a relief. It's difficult to work withsome doctors when you know more about your situation than they do. I actually thought they were going to kill her until the endo doctor showed up. He is a personal friend of Jodi's endo doctor and came to see her because her regular doctor is on vacation. He was our knight in shining armor on Sat. that is for sure.
It is going to be a long road to recovery for Jodi. She won't be going home for some time, but will be moved to a transitional facility when she is able to do at least 3 hours of physical therapy a day.
I don't know if this is making any sense, it's the middle of the night, I can't sleep, too worried about Jodi and wondering if I made the right decision to come home, but I needed to talk about the incompitance(sp) of some of the people that call themselves doctors.
Again, thanks for your warm words of support and please continue to keep Jodi in your thoughts.
~whirlway


#17 PAULINE

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Posted 06 August 2007 - 12:15 AM

HI Whirlway,

I am so sorry to hear about your sisters condition and I hope she makes a speedy recovery.
As for your self hang in there and are thoughts are with you.




Pauline

#18 Sweet

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Posted 06 August 2007 - 03:55 AM

Wow this sounds like a nightmare. I'm sure Jodi is so glad to have you in her cheer leading section. Sounds like things are quite serious and I'm glad you've found a doctor that you feel understands what's happening. It is very scary when you feel as a patient or family member that you have a better grip on the situation than the medical professionals.

You continue to be in my thoughts and I hope she makes the leap to feeling better soon!
Warm and gentle hugs,

Pamela
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#19 beaty71

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Posted 06 August 2007 - 08:12 AM

Hi Whirlway,
My thoughts are with you and your sister. She is lucky to have such a loving sister by her side.
Take care, Diana
Diana