Re: we're back!!! :)

[Guest guest]

Glad to have you back. Portland didn't get it nearly as bad as

Washington did. My sister lives in Kirkland and got power back,

too. She says that the traffic has been a nightmare in Seattle with

all of the lights not working. (n, 17, systemic)

On Dec 18, 2006, at 11:16 PM, bound for london wrote:

> Wow, what a week. We lost power on Thursday night and have been

> cold and in the dark until 7 p.m. Monday night. Oh my! Next time we

> will be much more ready. joe is home for Christmas and sick. Ick.

> Hopefully she doesn't get too sick. Next Remicade is Friday. Hope

> all is well with everyone. I have an amazingly full inbox. It has

> been busy!

>

> e, mom to joe 19 poly + lupus

>

> __________________________________________________

>

[Guest guest]

Nightmare doesn't even close to describing. Every store is sold out of propane,

batteries, flashlights, emergency radios etc. It was crazy. Over a million

people out of power and some still out after 6 days. We went 5. Crazy!

Unbelievable actually. Thankfully we are back in power and loving it. We spent

last Christmas out too. Not fun! Yeah, not fun trying to get thousands of cars

through big intersections with 4 way stops that most don't understand how to

drive in. Ooh boy. joe threatened to go back to school because she had power in

her apartment.

e

Price <bc.price@...> wrote:

Glad to have you back. Portland didn't get it nearly as bad as

Washington did. My sister lives in Kirkland and got power back,

too. She says that the traffic has been a nightmare in Seattle with

all of the lights not working. (n, 17, systemic)

On Dec 18, 2006, at 11:16 PM, bound for london wrote:

> Wow, what a week. We lost power on Thursday night and have been

> cold and in the dark until 7 p.m. Monday night. Oh my! Next time we

> will be much more ready. joe is home for Christmas and sick. Ick.

> Hopefully she doesn't get too sick. Next Remicade is Friday. Hope

> all is well with everyone. I have an amazingly full inbox. It has

> been busy!

>

> e, mom to joe 19 poly + lupus

>

> __________________________________________________

>

[Guest guest]

--e,

What a awful time you must have had, We lost power for a few days

when we lived in Rosemount and stright line winds went though and

caused so much damage. You dont realize just how dependant EVERYTHING

is on electricty.

How did Joe's remicade go on the 22nd, i read she had it the same day

as Nick did. I hope it was uneventful and that it is helping her as

much as it helps Nick.

I hope you were able to relax and enjoy the rest of your holidays.

hugs Helen and (9,systemic)

- In , bound for london <boundforlondon@...>

wrote:

>

> Nightmare doesn't even close to describing. Every store is sold out

of propane, batteries, flashlights, emergency radios etc. It was

crazy. Over a million people out of power and some still out after 6

days. We went 5. Crazy! Unbelievable actually. Thankfully we are back

in power and loving it. We spent last Christmas out too. Not fun!

Yeah, not fun trying to get thousands of cars through big

intersections with 4 way stops that most don't understand how to

drive in. Ooh boy. joe threatened to go back to school because she

had power in her apartment.

>

> e

>

> Price <bc.price@...> wrote:

> Glad to have you back. Portland didn't get it nearly as

bad as

> Washington did. My sister lives in Kirkland and got power back,

> too. She says that the traffic has been a nightmare in Seattle with

> all of the lights not working. (n, 17, systemic)

>

> On Dec 18, 2006, at 11:16 PM, bound for london wrote:

>

> > Wow, what a week. We lost power on Thursday night and have been

> > cold and in the dark until 7 p.m. Monday night. Oh my! Next time

we

> > will be much more ready. joe is home for Christmas and sick. Ick.

> > Hopefully she doesn't get too sick. Next Remicade is Friday. Hope

> > all is well with everyone. I have an amazingly full inbox. It has

> > been busy!

> >

> > e, mom to joe 19 poly + lupus

> >

> > __________________________________________________

> >

[Guest guest]

Helen,

Yes, she had another Remicade. I don't know about it yet. The doctor is not so

sure if this so good or not. She didn't sleep through this infusion like the

last couple but then we drove a couple hours to my brothers for a Christmas

party and she fell right asleep on the couch. Too bad for her, but good for the

family that was there to actually see her and how this stinking stuff affects

her. She has a doctor appointment on the 2nd and they drew blood out of her IV.

I don't quite understand that because they did the draw after the infusion. I

thought that was weird because it seemed like it would be best to do before the

infusion. What do they do for Nick? We are still new on the remicade so still

many questions. The nurse mentioned that they were drawing blood for genetic

testing or dna or something. I have no idea what that meant but we will ask on

Tuesday.

She has been home for about 2 weeks and we have used the wheelchair quite a

bit while out shopping. I think part of it is that she suffers through school so

not to let everyone in her apartment and college chums know how bad it is and

then finally gives in to it all at home. It is frustrating.

Happy New Year and may this be the year for all of us to leave JRA behind and

may we just meet here to chat. That is my prayer for 2007!

e, mom to joe who turned 20 on the 29th!!!!, poly and lupus

hburger64 <hburger64@...> wrote:

--e,

What a awful time you must have had, We lost power for a few days

when we lived in Rosemount and stright line winds went though and

caused so much damage. You dont realize just how dependant EVERYTHING

is on electricty.

How did Joe's remicade go on the 22nd, i read she had it the same day

as Nick did. I hope it was uneventful and that it is helping her as

much as it helps Nick.

I hope you were able to relax and enjoy the rest of your holidays.

hugs Helen and (9,systemic)

- In , bound for london <boundforlondon@...>

wrote:

>

> Nightmare doesn't even close to describing. Every store is sold out

of propane, batteries, flashlights, emergency radios etc. It was

crazy. Over a million people out of power and some still out after 6

days. We went 5. Crazy! Unbelievable actually. Thankfully we are back

in power and loving it. We spent last Christmas out too. Not fun!

Yeah, not fun trying to get thousands of cars through big

intersections with 4 way stops that most don't understand how to

drive in. Ooh boy. joe threatened to go back to school because she

had power in her apartment.

>

> e

>

> Price <bc.price@...> wrote:

> Glad to have you back. Portland didn't get it nearly as

bad as

> Washington did. My sister lives in Kirkland and got power back,

> too. She says that the traffic has been a nightmare in Seattle with

> all of the lights not working. (n, 17, systemic)

>

> On Dec 18, 2006, at 11:16 PM, bound for london wrote:

>

> > Wow, what a week. We lost power on Thursday night and have been

> > cold and in the dark until 7 p.m. Monday night. Oh my! Next time

we

> > will be much more ready. joe is home for Christmas and sick. Ick.

> > Hopefully she doesn't get too sick. Next Remicade is Friday. Hope

> > all is well with everyone. I have an amazingly full inbox. It has

> > been busy!

> >

> > e, mom to joe 19 poly + lupus

> >

> > __________________________________________________

> >

[Guest guest]

--Hi e,

I am sorry this remicade doesnt seem to be a quick wonder drug for

Joe. How often is she going between infusions??? Nick started to do

really well once we got them to 4 weeks apart. Its finally enabled us

to get off the dreaded prednisone. I hope things improve for Joe.

I too,think its strange that they draw the labs after the infusion.

As soon as the IV is in Nick they draw off the blood for his labs

before giving him any of this pre-meds and the remciade. This makes

more sense to me because you can see how his labs are 4 weeks post

last infusion,before the remicade is given again. I am also able to

get a copy of the labs before we leave and know exactly where his

values are. This way I am able to contact the doctor with any

concerns if I see something out of whack before she has even seen the

results. Nick has his remicade on a friday with is also MTX day, i

can see if his liver functions are good before I give the MTX ( we

have had a little issue with this lately)

I hope 2007 proves to be a better year for Joe....

hugs Helen and (9,systemic)

- In , bound for london <boundforlondon@...>

wrote:

>

> Helen,

>

> Yes, she had another Remicade. I don't know about it yet. The

doctor is not so sure if this so good or not. She didn't sleep

through this infusion like the last couple but then we drove a couple

hours to my brothers for a Christmas party and she fell right asleep

on the couch. Too bad for her, but good for the family that was there

to actually see her and how this stinking stuff affects her. She has

a doctor appointment on the 2nd and they drew blood out of her IV. I

don't quite understand that because they did the draw after the

infusion. I thought that was weird because it seemed like it would be

best to do before the infusion. What do they do for Nick? We are

still new on the remicade so still many questions. The nurse

mentioned that they were drawing blood for genetic testing or dna or

something. I have no idea what that meant but we will ask on Tuesday.

>

> She has been home for about 2 weeks and we have used the

wheelchair quite a bit while out shopping. I think part of it is that

she suffers through school so not to let everyone in her apartment

and college chums know how bad it is and then finally gives in to it

all at home. It is frustrating.

>

> Happy New Year and may this be the year for all of us to leave

JRA behind and may we just meet here to chat. That is my prayer for

2007!

>

> e, mom to joe who turned 20 on the 29th!!!!, poly and lupus

>

> hburger64 <hburger64@...> wrote:

> --e,

>

> What a awful time you must have had, We lost power for a few days

> when we lived in Rosemount and stright line winds went though and

> caused so much damage. You dont realize just how dependant

EVERYTHING

> is on electricty.

>

> How did Joe's remicade go on the 22nd, i read she had it the same

day

> as Nick did. I hope it was uneventful and that it is helping her as

> much as it helps Nick.

>

> I hope you were able to relax and enjoy the rest of your holidays.

>

> hugs Helen and (9,systemic)

>

> - In , bound for london <boundforlondon@>

> wrote:

> >

> > Nightmare doesn't even close to describing. Every store is sold

out

> of propane, batteries, flashlights, emergency radios etc. It was

> crazy. Over a million people out of power and some still out after

6

> days. We went 5. Crazy! Unbelievable actually. Thankfully we are

back

> in power and loving it. We spent last Christmas out too. Not fun!

> Yeah, not fun trying to get thousands of cars through big

> intersections with 4 way stops that most don't understand how to

> drive in. Ooh boy. joe threatened to go back to school because she

> had power in her apartment.

> >

> > e

> >

> > Price <bc.price@> wrote:

> > Glad to have you back. Portland didn't get it nearly as

> bad as

> > Washington did. My sister lives in Kirkland and got power back,

> > too. She says that the traffic has been a nightmare in Seattle

with

> > all of the lights not working. (n, 17, systemic)

> >

> > On Dec 18, 2006, at 11:16 PM, bound for london wrote:

> >

> > > Wow, what a week. We lost power on Thursday night and have been

> > > cold and in the dark until 7 p.m. Monday night. Oh my! Next

time

> we

> > > will be much more ready. joe is home for Christmas and sick.

Ick.

> > > Hopefully she doesn't get too sick. Next Remicade is Friday.

Hope

> > > all is well with everyone. I have an amazingly full inbox. It

has

> > > been busy!

> > >

> > > e, mom to joe 19 poly + lupus

> > >

> > > __________________________________________________

> > >

[Guest guest]

Hi Helen,

I flagged this post but then lost it...joe is going every 6 weeks now for

infusions. She can't go any quicker because of school. I have to drive 3 hours

north to pick her up and bring her down 2 hours and then back afterwards. She

has a class until 2 in the afternoon or later every day so she can't come any

quicker than every 6 weeks. And we have to do the infusions at the VM hospital.

Her last infusion was even more expensive because they are giving her more

medicine now. She has not been able to get off any meds yet and spent the

Christmas break in the wheelchair or sleeping most of the time. Bummer. Her

other options are Kineret or Humira and she is not interested. So, we keep

trying. She is what they call a partial responder with her meds. I doubt the

other meds would do any better unfortunately.

Hope Nick is doing well.

e, mom to joe 20 poly + lupus

hburger64 <hburger64@...> wrote:

--Hi e,

I am sorry this remicade doesnt seem to be a quick wonder drug for

Joe. How often is she going between infusions??? Nick started to do

really well once we got them to 4 weeks apart. Its finally enabled us

to get off the dreaded prednisone. I hope things improve for Joe.

I too,think its strange that they draw the labs after the infusion.

As soon as the IV is in Nick they draw off the blood for his labs

before giving him any of this pre-meds and the remciade. This makes

more sense to me because you can see how his labs are 4 weeks post

last infusion,before the remicade is given again. I am also able to

get a copy of the labs before we leave and know exactly where his

values are. This way I am able to contact the doctor with any

concerns if I see something out of whack before she has even seen the

results. Nick has his remicade on a friday with is also MTX day, i

can see if his liver functions are good before I give the MTX ( we

have had a little issue with this lately)

I hope 2007 proves to be a better year for Joe....

hugs Helen and (9,systemic)

- In , bound for london <boundforlondon@...>

wrote:

>

> Helen,

>

> Yes, she had another Remicade. I don't know about it yet. The

doctor is not so sure if this so good or not. She didn't sleep

through this infusion like the last couple but then we drove a couple

hours to my brothers for a Christmas party and she fell right asleep

on the couch. Too bad for her, but good for the family that was there

to actually see her and how this stinking stuff affects her. She has

a doctor appointment on the 2nd and they drew blood out of her IV. I

don't quite understand that because they did the draw after the

infusion. I thought that was weird because it seemed like it would be

best to do before the infusion. What do they do for Nick? We are

still new on the remicade so still many questions. The nurse

mentioned that they were drawing blood for genetic testing or dna or

something. I have no idea what that meant but we will ask on Tuesday.

>

> She has been home for about 2 weeks and we have used the

wheelchair quite a bit while out shopping. I think part of it is that

she suffers through school so not to let everyone in her apartment

and college chums know how bad it is and then finally gives in to it

all at home. It is frustrating.

>

> Happy New Year and may this be the year for all of us to leave

JRA behind and may we just meet here to chat. That is my prayer for

2007!

>

> e, mom to joe who turned 20 on the 29th!!!!, poly and lupus

>

> hburger64 <hburger64@...> wrote:

> --e,

>

> What a awful time you must have had, We lost power for a few days

> when we lived in Rosemount and stright line winds went though and

> caused so much damage. You dont realize just how dependant

EVERYTHING

> is on electricty.

>

> How did Joe's remicade go on the 22nd, i read she had it the same

day

> as Nick did. I hope it was uneventful and that it is helping her as

> much as it helps Nick.

>

> I hope you were able to relax and enjoy the rest of your holidays.

>

> hugs Helen and (9,systemic)

>

> - In , bound for london <boundforlondon@>

> wrote:

> >

> > Nightmare doesn't even close to describing. Every store is sold

out

> of propane, batteries, flashlights, emergency radios etc. It was

> crazy. Over a million people out of power and some still out after

6

> days. We went 5. Crazy! Unbelievable actually. Thankfully we are

back

> in power and loving it. We spent last Christmas out too. Not fun!

> Yeah, not fun trying to get thousands of cars through big

> intersections with 4 way stops that most don't understand how to

> drive in. Ooh boy. joe threatened to go back to school because she

> had power in her apartment.

> >

> > e

> >

> > Price <bc.price@> wrote:

> > Glad to have you back. Portland didn't get it nearly as

> bad as

> > Washington did. My sister lives in Kirkland and got power back,

> > too. She says that the traffic has been a nightmare in Seattle

with

> > all of the lights not working. (n, 17, systemic)

> >

> > On Dec 18, 2006, at 11:16 PM, bound for london wrote:

> >

> > > Wow, what a week. We lost power on Thursday night and have been

> > > cold and in the dark until 7 p.m. Monday night. Oh my! Next

time

> we

> > > will be much more ready. joe is home for Christmas and sick.

Ick.

> > > Hopefully she doesn't get too sick. Next Remicade is Friday.

Hope

> > > all is well with everyone. I have an amazingly full inbox. It

has

> > > been busy!

> > >

> > > e, mom to joe 19 poly + lupus

> > >

> > > __________________________________________________

> > >