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Re: update on Jenifer

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Sorry is not feeling well. I hope she is feeling better in

time for the conference. I don't blame you for being worried - I would

be too. Good luck to you all, Michele (17, pauci & spondy)

update on Jenifer

Where to begin

Since I last wrote has been in the ER twice with hip pain.

The first time she was put on a dose pack, muscle relaxers and vicoden

ES...The following Thursday school started. Thursday night we were back

in the ER. This time she was given a shot of steroids and two of

morphine. If she didn't get relief she was to be admitted. She came home

but was out of school Friday. A " pain management " doctor gave her

Lidoderm 5% which is fantastic for on site numb relief, vioxx and

tramadol. Currently her cocktail is vioxx, Lidoderm, elavil, tramadol.

Today she gets up with if I walk slow I can be a 2-3 pain marker. She is

covered in therma care icy hots and the Lidoderm patches. These past few

weeks have be really rough on her...and the rest of us. I am going to

try to get Voglers office today to see if they have her records and

could see her sooner. She is supposed to go to New York with the

Presidential Youth Leadership Conference for a week at the end of the

month. I am SO worried about this. Well, I need to take her some

additional patches as she was out of them at school.

Have a sunny day

Carol and AS

--- car54ol@...

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Carol:

I will be praying that can get into the new rheumy quickly.

Bless her heart. And with such an important event coming up....

You know that Rob started Enbrel for his AS? The doc is very hopeful

about it. He has only had 2 shots now. I am nervously (as usual)

waiting...

Keep us posted.

and Rob 15 Spondy

On Tue, 17 Aug 2004 12:28:07 -0400 " Carol Shroyer "

<car54ol@...> writes:

Where to begin

Since I last wrote has been in the ER twice with hip pain.

The first time she was put on a dose pack, muscle relaxers and vicoden

ES...The following Thursday school started. Thursday night we were back

in the ER. This time she was given a shot of steroids and two of

morphine. If she didn't get relief she was to be admitted. She came home

but was out of school Friday. A " pain management " doctor gave her

Lidoderm 5% which is fantastic for on site numb relief, vioxx and

tramadol. Currently her cocktail is vioxx, Lidoderm, elavil, tramadol.

Today she gets up with if I walk slow I can be a 2-3 pain marker. She is

covered in therma care icy hots and the Lidoderm patches. These past few

weeks have be really rough on her...and the rest of us. I am going to try

to get Voglers office today to see if they have her records and could see

her sooner. She is supposed to go to New York with the Presidential Youth

Leadership Conference for a week at the end of the month. I am SO worried

about this. Well, I need to take her some additional patches as she was

out of them at school.

Have a sunny day

Carol and AS

--- car54ol@...

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Hi e!

has also been seeing a psychiatrist who put her on Zoloft and a

psychologist (?) who is trying to give her mental tools to deal with a disease

that is associated with the older population. I am trying to get her into the

new rheumy as her pain is out of hand. She is doing all the things she is asked

to do...trying her best...we are all just so worn out by this unrelenting

setback. I am her primary support person and unfortunately I had a cyst removed

from my neck last Monday so I have been rather unavailable. I am functioning now

but just a few days out of her loop was noticeable. Ken (husband) and (

brother) try to fill in but she is rather difficult when she hurts so much. I

was relieved that the MRI and bone scan came back perfect but wished that

something was found to run with too. I will try to do better to keep people

posted on her...Thanks for your input.

Carol and 17 AS

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Carol - were you able to get through to Dr. Voglers office? His medical

secretary Shea is really a wonderful lady if you can get through. Hunter was

unable to wait for her scheduled apppointment and I ended up calling after hours

to speak with Dr. Vogler. Explained how bad off she was and he told me to be

in Atlanta the next day and he worked her in. THis has happened a couple of

times. I have all the numbers if you need them and last week Dr. Volger's

Physician Assistant gave me her direct line. Let me know if we can help in any

way. Sandi, Ken and Hunter (systemic 6)

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Hi Sandy~

There was a message on the machine when I got home Friday and I called to

leave another voice mail message at 3 PM without anyone calling us back. Ken and

I are close to a panic as leaves for New York on Saturday for a week.

It is a non refundable trip or we would do that. It couldn't be happening at a

worse time. She has been in bed/recliner all weekend. She walks like her knees

wont bend. She is always holding on to something to defer the weight on the

knees/hips. If I don't hear from them tomorrow I will email the group for

additional numbers. Thanks so much for emailing.

Carol and 17 AS

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