Check In , Helen, Alia, Rusty, Tree,

[Guest guest]

Putting out a call to those who have not posted in a while. If anyone has

heard anything please feel free to update us on them. Alia and Caroline, Helen

and Nicky Noodle, Rusty, Tree, All who I have not listed.

Robbin

**************One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. Try it now.

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[Guest guest]

Hey, Robbin, we're doing okay here in Utah. Audrey's iritis has calmed down for

now, but the optho put her on anothe eye drop called Acular while he's trying to

wean her off the pred forte. So my little 5 year old girl is now on 6 different

medications for her arthritis and the side effects. That was really depressing

to think about when I typed up a list of all of her medications. Unfortunately,

she is scheduled for strabismus (eye muscle surgery) again the end of January.

I think we're staying at monthly Remicade for a little while - the eye doc

didn't say anything about changing it. Joint wise, she seems to be doing well,

so we'll see how things go.

I've started a blog with some pics on it if anyone's interested. The address is

newmom2003.blogspot.com.

Merry Christmas!!

Gene, , Audrey and Bryce son

Salt Lake City, UT

@...: Robbin40@...: Wed, 24 Dec 2008

09:17:53 -0500Subject: Check In , Helen, Alia, Rusty, Tree,

Putting out a call to those who have not posted in a while. If anyone has heard

anything please feel free to update us on them. Alia and Caroline, Helen and

Nicky Noodle, Rusty, Tree, All who I have not listed. Robbin**************One

site keeps you connected to all your email: AOL Mail, Gmail, and Mail. Try

it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025)\

[Guest guest]

Well, I am not the Helen you are referring too....but it has been a while since

I have posted, so I better give a quick update.  

My daughter nne (10) has poly jra.   She started out at age 3, but just

about 1 yr ago the doctor diagnosed with her 12 joints being effected.    She

went to the doc the other day and is down to only 2 1/2 joints!!!   She has been

off of her mtx since Sept...and we weaned her off of the Enbrel (mostly due to

no pain, and our busy schedule).   She hasn't had any pain since then......so

she was reluctant to go back to the doc....thinking she would put her back on

Enbrel (she hates shots).  Well, she didn't put her back on Enbrel (yet).  She

wants to try the knee injections and see if that helps her out any....if not,

then we might go back on Enbrel or switch to the Humara (sp?).  only because

that is only 2X a month....instead of 4.  

she is scared of of the injections.....but she is ok to try it....knowing that

it may help her.  The doc said our other option was to go right back on the

Enbrel or start all over again with naproxen......we didn't want to do

that...since we have made such progress already!

I hope everyone else is well this holiday season! 

Stay Warm!!!

Helen

________________________________

From: " Robbin40@... " <Robbin40@...>

Sent: Wednesday, December 24, 2008 9:17:53 AM

Subject: Check In , Helen, Alia, Rusty, Tree,

Putting out a call to those who have not posted in a while. If anyone has

heard anything please feel free to update us on them. Alia and Caroline, Helen

and Nicky Noodle, Rusty, Tree, All who I have not listed.

Robbin

************ **One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. Try it now.

(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco

m00000025)

[Guest guest]

Hi all and a merry Christmas to all,

I am sorry I have been absent for awhile. life can sometimes be a stuggle and in

these days and times it hits everyone.

We lost my father in law to Cancer in Sept, was Dx with Elhers danlos

Symdrome was well as his Systemic JRA

I had surgery, a shoulder decompression as I have a partial tear in my rotator

cuff in October and was laid up for awhile. I have been going to PT since the

summer, my fibromyalgia is doing well, but my shoulder will need more intensive

surgery in the new year.

Dan got laid off in Nov, so the medical nightmare with Nicks remicade continues.

We are on cobra right now and will switch to my company's high deductable plan

in Jan, so I need to find $6000 deductable, sigh.

last week a close work buddy, left the office one morning and said he would be

right back, went home and committed suicide. he has been with the company 30+

years so it was a complete shock to all. We had a grief counciller in at work

last friday and yesterday was his service. TOO TOO sad.

On to the good news, nick is doing well and come the new year we are going to

try and go 6 weeks between remicade infussions, cross your fingers will ya.

And my son nows in the navy is home on leave for the holidays, so its nice to be

surrounded by loved ones.

Well thats about us in a nutshell, my shoulder is worthless so typing is never

easy, so i try to aviod it where possible.

hugs and kisses to all our friends out there, sorry i have been such a slacker

lately. Ill try and do better in the new year ))

hugs Helen and nicholas ( 11, systemic JRA and Elhers danlos Syndrome, classical

type)

_________________________________________________________________

Life on your PC is safer, easier, and more enjoyable with Windows Vista®.

http://clk.atdmt.com/MRT/go/127032870/direct/01/

[Guest guest]

Hi Helen,

Wow! So nice to hear such an incredibly positive update! Seems like your

daughter's treatment program worked really well. I'm so glad to hear that.

So many advances have been made that today, versus when my son first got sick

back in 1995, there are better acting meds and, so importantly, more options. If

one doesn't work quite well enough, there are others that may. If a child has

side effects from one, there's perhaps another that might be as effective

without troublesome side effects.

I completely understand nne's reluctance about injections. My son feels the

same way. Wouldn't it be so totally awesome if they could figure out a different

method of delivery? Maybe one day they will : )

Here's hoping that a localized injection will take care of the lingering

inflammation in your daughter's knee, and that the arthritis won't become any

more bothersome.

Happy Holidays!

Georgina

Check In , Helen, Alia, Rusty, Tree,

Putting out a call to those who have not posted in a while. If anyone has

heard anything please feel free to update us on them. Alia and Caroline, Helen

and Nicky Noodle, Rusty, Tree, All who I have not listed.

Robbin

************ **One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. Try it now.

(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco

m00000025)

[Guest guest]

Aloha ,

Audrey may still have an uphill challenge but with your family's love and

support, she'll manage to overcome. Do keep us posted as the date for surgery

nears, so we can all keep her in our thoughts and share some positive energies.

I think that major congratulations are due, for your perseverance and efforts at

weight loss. My gosh! I was so excited to read about your shopping trip. The

fitting room can, at times, be an intimidating place. So wonderful, that you've

come so far! Keep up the great work!

Happy holidays,

Georgina

Check In , Helen, Alia, Rusty, Tree,

Putting out a call to those who have not posted in a while. If anyone has

heard anything please feel free to update us on them. Alia and Caroline, Helen

and Nicky Noodle, Rusty, Tree, All who I have not listed. Robbin

__

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[Guest guest]

Thanks for checking in, Helen. You and Nick have been in our thoughts. So sorry

to hear about your co-worker. These are trying times for so many. Please stay

strong.

Much Aloha,

Georgina

RE: Check In , Helen, Alia, Rusty, Tree,

Hi all and a merry Christmas to all,

I am sorry I have been absent for awhile. life can sometimes be a stuggle and

in these days and times it hits everyone.

We lost my father in law to Cancer in Sept, was Dx with Elhers danlos

Symdrome was well as his Systemic JRA

I had surgery, a shoulder decompression as I have a partial tear in my rotator

cuff in October and was laid up for awhile. I have been going to PT since the

summer, my fibromyalgia is doing well, but my shoulder will need more intensive

surgery in the new year.

Dan got laid off in Nov, so the medical nightmare with Nicks remicade

continues. We are on cobra right now and will switch to my company's high

deductable plan in Jan, so I need to find $6000 deductable, sigh.

last week a close work buddy, left the office one morning and said he would be

right back, went home and committed suicide. he has been with the company 30+

years so it was a complete shock to all. We had a grief counciller in at work

last friday and yesterday was his service. TOO TOO sad.

On to the good news, nick is doing well and come the new year we are going to

try and go 6 weeks between remicade infussions, cross your fingers will ya.

And my son nows in the navy is home on leave for the holidays, so its nice to

be surrounded by loved ones.

Well thats about us in a nutshell, my shoulder is worthless so typing is never

easy, so i try to aviod it where possible.

hugs and kisses to all our friends out there, sorry i have been such a slacker

lately. Ill try and do better in the new year ))

hugs Helen and nicholas ( 11, systemic JRA and Elhers danlos Syndrome,

classical type)

__________________________________________________________

Life on your PC is safer, easier, and more enjoyable with Windows Vista®.

http://clk.atdmt.com/MRT/go/127032870/direct/01/

[Guest guest]

Hello All,

It has been so long since I have checked in with everyone. Things

have just been so busy, both with family stuff and work stuff.

Here is a quick update for those of you who still remember me. :-)

Bob and I still have jobs so we are grateful for that. Especially,

since the work we do is tied to the state and our state is basically

bankrupt.

My son will be 17 next month which I can hardly believe. He was

selected as player of the year for the northwest region. quite and

honor and we are so excited for him. His basketball team won their

region and is moving on to the playoff's. :-)

Aundrea finished up her modeling school at Casablanca's. She

loved it. I will have to post a couple of pictues from her photo

shoot. It has been a great experience for her and lots more fun than

going to dr. appointmnents.

Drea's health has been improving. She is off all of her medications

right now. She should stay on a few of them but for those of you

with teenagers or young adults you know how is trying to convince

them as to what we think is best for them. :-)

Her flares are less often and when she does get them they don't last

as longs. Typically 4 or 5 difficult days each month. they seem to

coincide more with her cycle now.

She is still home schooled this year but we are planning to send her

to high school next year part time and will have her take two classes

online. She is happy about this.

I guess that's it in a nutshell.

I hope all is going well for each of you. I will have to try to read

thru some messages to get filled in.

Take Care and Be Blessed,

-

-- In , Robbin40@... wrote:

>

> Putting out a call to those who have not posted in a while. If

anyone has

> heard anything please feel free to update us on them. Alia and

Caroline, Helen

> and Nicky Noodle, Rusty, Tree, All who I have not listed.

> Robbin

> **************One site keeps you connected to all your email: AOL

Mail,

> Gmail, and Mail. Try it now.

> (http://www.aol.com/?optin=new-

dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025)

>

>

>