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emst
03-30-2008, 06:44 PM
I just received a phone call from Liz, thought for sure it would be John but Liz has her cell phone with her.
She said that all she wants to do is sleep and they haven't done anything different than what they've been doing all week and that is giving her steroids. She said they did all the same tests over again in the hospital, now she'll have even more opinions. The doctor that saw her today said that he doesn't think that she has SJS. You can tell she is frustrated because one will say she has it another one will say she doesn't. She said all she knows is that her whole body feels and looks like she has it and she is very tired.
I told her to rest and take care of herself and passed on all the well wishes and prayers from everyone. She told me to thank all of you for your prayers, so Thank You from Liz.
She will give me a call again tomorrow, so when I hear from her I will add the update to this thread.
As Liz's friend I too want to thank everyone for keeping her in your thoughts and prayers.
Hugs,
Elaine

HisKid
03-30-2008, 07:51 PM
Elaine, thanks for the update!

anitastreet
03-30-2008, 07:58 PM
oh dear.. I've been so busy with the kids and Spring Break this week I didn't even realize she was sick..hugs and prayers from us..thanks Elaine for the update....I'll have to go catch up on the forums.

Andrea
03-30-2008, 09:30 PM
I know the frustration she is feeling. I hope that she feels better and that she can figure out what doctor to trust. :)

eb2177
03-30-2008, 10:19 PM
Thank you for keeping us updated Elaine, and for passing on our well wishes. I hope that they can find the right answer and help her to feel better soon. I'll be praying for her too! :o)

triplescoop
03-30-2008, 11:19 PM
So Sorry. I've been there! I got it a couple of years ago as a result of a drug reaction to an IV antibiotic I was taking for a prolonged, severe staph infection; compounded by existing autoimmune diseases...Lupus and sjogrens. There wasn't a part of my body that didn't look burned or blistered and it affected every aspect of my mucous membranes. Your best bet is for steroids and fluids, and good skin care if your skin starts to slough off. Best wishes for a speedy recovery. Of my many MD's that I see routinely, Infectious disease was, by far, the most on top of Steven's Johnsons.

Melody
03-31-2008, 01:06 AM
Oh wow. I missed that she wasn't even feeling well. Send her my wishes for a quick recovery. I hope they can agree on what she has so she can get treated and can feel better soon.

gigichet
03-31-2008, 03:27 AM
thank you for the update Elaine...knowing Liz she probably has her laptop at the hospital and is distracting herself doing tons of her awesome layouts. Liz is in my thoughts and prayers...hang in there girlfriend.

emst
03-31-2008, 01:44 PM
Here is the lasted on Liz
I just talked to John and he said that they are trying to get her transferred to a hospital in Queens. Right now they are refusing to take her until they do a biopsy at the hospital she is in right now. They both are scarred and frustrated which is understandable. John said that her whole body now is red and her mouth is full of open sores, which if you read on Steven Johnson's Syndrome those are all symptoms. John also said that Liz has signed a health care proxy which she insisted on wanting to get done in case she gets where she can't make her own decisions.
Please continue to keep her in your thoughts and prayers.
Liz said to say thank you for all your well wishes and prayers.
Thank you
Elaine

HollyS
03-31-2008, 02:19 PM
Gosh....bless her heart (and John's)! I sure hope this all turns around quickly for her! Thanks for updating us!

charliesnana
03-31-2008, 02:27 PM
Thanks, Elaine, for keeping us updated. My heart reaches out to both Liz and John. Wish there was a way to be of help to them. Sending lots of love and prayers their way.

gigichet
03-31-2008, 02:56 PM
Thank you for the update...Liz really needs all of our prayers and hopefully her doctors will figure out is wrong soon and get her some relief.

shavari
03-31-2008, 03:01 PM
oh wow ... please send her and John my thoughts and prayers from Australia too .. poor luvs

I cant believe the medical system in the US .. it really amazes me how hospitals can refuse to take patients who are obviously seriously ill. As atrotious as our own system is here in Australia (waiting lists are enormous for elective surgeries, not enough staff, beds etc), our hospitals dont refuse patients who are seriously ill. If the hospital is full, they take them into casualty and then transfer them asap to a hospital which can take them.

I hope Liz finds relief very very soon and is on the road to recovery.

PamWhit
03-31-2008, 04:13 PM
Thanks Elaine for the update. Sure wish there was more we could do for Liz. But hopefully all our prayers will help.

kel3120
03-31-2008, 05:27 PM
Wow, I don't know how I missed this until now... My thoughts and prayers go out to Liz. I hope she is able to find a doctor that can figure out what is going on and help her to a speedy recovery.

wildstorm
04-01-2008, 06:38 AM
I have been a bit behind so I also have missed this. Please pass on my best to Liz and John. It goes with out saying that I am sending all the best to them. I hope they find out what is wrong and then they can help her. Hope the pain is not too bad for her.
Gale

ABitDaffy
04-01-2008, 06:52 AM
Elaine, thanks for the updates! Our prayers here are with Liz, John, and the kids...

ThoughtfilledMe
04-01-2008, 07:15 AM
My thoughts and prayers are still with Liz and John.