catching up

[Guest guest]

This has been a hectic and stressful time. Elliot, as you may know is having

a flare now. He was down to a low dose of prednisone (1.5 mg) and we

increased it to 9 mg and he seems much better although I'm not sure that it

really is holding him. Yesterday his gait was with a mild limp and this A.M.

he complained of ankle pain. We visited the ped. rheum. today and I have

mixed emotions about the day.

When Elliot was starting to have trouble 2 wks ago, the Dr. said we should

stumble thru till our visit and he would discuss Remicade. We weren't

stumbling but falling on our faces so we went up on the steroids last week.

Anyway I brought my father who is a physician so that he could ask any

medical questions which I may not know to ask. Well, first of all the Dr.

came in with his enterage of collegues, fellows , residents etc and I felt

that my visit was like Grand Rounds for him- he presented our options and

frankly painted a very dismal picture. He is in remicade mode now and is

looking for someone to volunteer i guess and he'll be able to publish data.

It became clear that there have been no pediatric cases yet. I don't want

Elliot to be the first. My father pointed out that remicade is similar to

Enbrel- which Elliot is taking. Enbrel works by providing " fake " receptors

for Tumor necrosis factor. Remicade has a similar mechanism of action but

more potent. It also works to bind TNF. Since Elliot is not responding to

Enbrel why would we get a better response with remicade? I questioned the

Dr, about cyclosporine and he said he has had patients who have responded

well and those who haven't. This is actually the route we are going, but he

even went as far as discussing bone marrow transplant. He has one patient who

after 10 yrs of chronic and debilitating disease went that route and 3 months

post transplant shows no evidence or signs of arthritis. The patient is still

on some lower doses of steroids because of the transplant. Transplant carries

heavy risks- it may not even take. I know that I'm rambling but I was

depressed and angry after my visit. I go to this Dr. for his skill and

experience as a clinician, and while I was told that his bedside manner was

not on the same level- just listening to these " worst case scenerios " was

distressing. I actually have an appointment for a second opinion for next

week( which I had set up when Elliot started to flare) I hope we see some

results with the cyclosporine, but I thought you might find the info on

transplant interesting.

Rena

[Guest guest]

Hi Rena,

Don't ever worry about rambling on, here. We're all very interested in

hearing about the children and how they are doing. I'm so sorry that

Elliot is still having arthritis pain, even after you raised the dose of

prednisone to 9mgs. I know how stressful it must be for you all. I had

really hoped that that would at least tide him over for the time being.

I have not heard of any children taking remicade. And like you said, if

it works in a way similar to Enbrel ~and your son hasn't had great

benefit from Enbrel~ who's to say he'll have a more positive response to

this one? Maybe the cyclosporine will be beneficial. Seems like it's

worked well for a lot of other children. Hopefully it will do good

things for Elliot, too.

Any idea how many patients the doctor has done the bone marrow

transplant on? Is it just the one or does he have others who have also

had good response? That seems very risky to me. For Josh at least, I

don't think his disease is severe enough to warrant even considering it.

Maybe he was just laying out ALL the possible options.

I'm glad you've decided to visit another rheumatologist for a second

opinion. Maybe he or she will have some different ideas. Try to stay

hopeful. Things should start looking up soon.

Give Elliot a big gentle hug!

~Georgina

[Guest guest]

Hi Georgina,

I do believe that the Dr. was listing all the possible options- although I

also believe he was doing it to lecture/ educate the people who came in with

him. I think that when we visit again I will request not to have additional

physicians and students present. This Dr. has only one case who has had a

transplant and he was actually encouraging it and said " had he known 10 yrs

ago how this child would turn out from continued debilitation from JRA " he

would have suggested it then. The Dr. even said that if it was his child he

would " go for the gold " I don't thik that Elliot is up to that yet, and

truthfully the medical technology behind transplant improves every day. I

don't think that it is our next resort but more like our last resort.

The Dr. was saying that there have been a many cases where transplant was

done; some using the patients own marrow and rebooting so to speak with

chemo, others are using new marrow from a relative. ( His thoughts were that

it is better to get a whole new " motherboard " than to reboot)

Elliot began cyclosporine the other day and HATES it! I told him that he

needs to take it so his legs wouldn't hurt, but after increasing the

prednisone he says that he doesn't have pain so why take this?

, you wrote that Leigh-Ann had to change the dose as she couldn't

tolerate the drug. In what way? Elliot is taking 50 mg daily for one week and

then will take 50 mg twice a day. I dread when we get up to 2 times a day as

he is giving me a hard time just once daily.

Rena

[Guest guest]

Rena,

We all understand your frustrations. It sounds like the 2nd

opinion is the way to go. Good luck, we will be thinking

about you.

Jana

[Guest guest]

Rena,

I thought that like some people don''t react to MTX or it stops working for

them and then they take ARAVA that Remicade could fill that same spot for

folkd that don't do well on ENBREL.

[Guest guest]

Hey all, I thought I would update you on my daughter Casey's progress. We

have only been on the list for a short while, and I have been waiting for

this doctor appointment for her. Yesterday it had been 2 months since she

was diagnosed. She has been on Naprosen which has worked quite well except

for when she has had colds. Then it seems she takes ten steps backward in

her progress. The main concern now is her weight. But she gained a pound

and half in 2 months. We were all very happy. Although she still is

diagnosed as malnourished and we find out on Thurs. whether she will need to

be fed through the nose. I think this is a major improvement, and I think it

is mainly based on all of your advice. I fed her as though she had a gastro-

problem. Less fatty foods, smaller portions, and no acidy meals. It seemed

to work a little but she still is not eating in any sort of normal

proportions.

We are giving her dietary supplements and iron and calcium supplements. But

all in all yesterday really was a day to rejoice. Thanks to all who have

shared their wisdom and experience on here. You were a blessing to me and

kept my peace of mind. Thanks

Kim - Daughter of Casey 20 months old.

[Guest guest]

Hi Kim,

Great to hear from you. And I'm glad you had a bit of good news

yesterday, at the appt. Everybody responds differently to the various

NSAID's, so I'm glad you've already found one that works well for Casey.

The iron and calcium supplements sound like a good idea, too. Since you

won't know for sure until Thursday, I'm assuming your daughter had some

blood work done. If so, be sure to ask the nurse or doctor about the SED

rate, the hemoglobin value, and the white blood cell count. These are

some pretty good clinical markers of the activity level of JRA. If her

SED rate is very high, they may mention the possibility of starting

prednisone`to further reduce some inflammation. If so, your daughter's

appetite may pick up considerably.

When my son first got sick, one of the scary parts was that he lost all

interest in food. He lost a lot of weight and it was a real challenge to

see that he ate at least a couple portions of healthy food throughout

the day. When he went into the hospital he was fed intravenously and

even that didn't bother him. He had no interest at all in eating until a

few days after they started giving him prednisone. Then, all of a sudden

he started requesting foods. He'd eat whatever was brought in during

mealtimes and then ask for other things, as well. It was really amazing.

He started to regain all his lost weight and then he gained even more.

He started filling in again, so you couldn't see the little rib bones

anymore. And he regained the healthy glow, that had disappeared when he

first got JRA. If steroids could have been a short term thing, there's

lots of benefits. I'm only upset wit it because Josh has needed to take

it for so long, as there are risks of side effects after long term use,

but it did help him so much in those early stages.

Give Casey a big, gentle hug from us! And let us know what they say on

Thursday, when you have a chance.

Much Aloha,

Georgina

[Guest guest]

Hi everyone

My has also gone off her food in a big way these past few weeks - it

seems to be a problem that is fairly general with JRA. I usually talk her

through her meals, though she never finishes them, I do try to get some of

it down. She's off to physiotherapy again tomorrow which is good because

her neck has really been troubling her and it worries me. Some days she is

fine, and other days (more of those days unfortunately) she battles.

I'm on leave for the next three weeks and I plan to be spending a lot of

valuable time with her - something that is very precious to us working moms.

I'm also off to the organic flea market to see if I can't find some oils or

things like that to help relax her and perhaps to use in the bath.

If I don't get a chance to read anymore from you guys please have a

wonderfull Christmas and a fantabulous New Year's Eve.

I guess I'll see you all next century then!

thanks and regards

Ady Ogilvie

M-Net Marketing

aogilvie@...

> Re: [ ] Catching up

>

> From: Georgina <gmckin@...>

>

> Hi Kim,

>

> Great to hear from you. And I'm glad you had a bit of good news

> yesterday, at the appt. Everybody responds differently to the various

> NSAID's, so I'm glad you've already found one that works well for Casey.

> The iron and calcium supplements sound like a good idea, too. Since you

> won't know for sure until Thursday, I'm assuming your daughter had some

> blood work done. If so, be sure to ask the nurse or doctor about the SED

> rate, the hemoglobin value, and the white blood cell count. These are

> some pretty good clinical markers of the activity level of JRA. If her

> SED rate is very high, they may mention the possibility of starting

> prednisone`to further reduce some inflammation. If so, your daughter's

> appetite may pick up considerably.

>

> When my son first got sick, one of the scary parts was that he lost all

> interest in food. He lost a lot of weight and it was a real challenge to

> see that he ate at least a couple portions of healthy food throughout

> the day. When he went into the hospital he was fed intravenously and

> even that didn't bother him. He had no interest at all in eating until a

> few days after they started giving him prednisone. Then, all of a sudden

> he started requesting foods. He'd eat whatever was brought in during

> mealtimes and then ask for other things, as well. It was really amazing.

> He started to regain all his lost weight and then he gained even more.

> He started filling in again, so you couldn't see the little rib bones

> anymore. And he regained the healthy glow, that had disappeared when he

> first got JRA. If steroids could have been a short term thing, there's

> lots of benefits. I'm only upset wit it because Josh has needed to take

> it for so long, as there are risks of side effects after long term use,

> but it did help him so much in those early stages.

>

> Give Casey a big, gentle hug from us! And let us know what they say on

> Thursday, when you have a chance.

>

> Much Aloha,

> Georgina

>

>

[Guest guest]

hello I have a lot of problems with as well getting her to eat enough

I should say she went to the doctor for vomiting and a headache yesterday

,and they weighed her she is back down to 31lb it seems to be a never ending

battle > other then that she is doing ok the head ache scared me a lot she

was in so much pain she just lounged there and threw up and she would just

leigh back down and hold her head it only lasted 24 hours so it must have

been a bug but I was so worried that she was going to go into a big flare

and or get real sick it seems ever since she has gotten jra every little

thing sends me into a panic well see you

>From: Adrienne Ogilvie <aogilvie@...>

>Reply- onelist

> " ' onelist' " < onelist>

>Subject: RE: [ ] Catching up

>Date: Fri, 17 Dec 1999 07:51:26 +0200

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>From sentto-80038-2319-shancna Thu Dec 16 23:42:49 1999

>Message-ID: <915D5201F4D8D111B6220060080EA656029EE7D3@...>

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>

>From: Adrienne Ogilvie <aogilvie@...>

>

>Hi everyone

>

>My has also gone off her food in a big way these past few weeks - it

>seems to be a problem that is fairly general with JRA. I usually talk her

>through her meals, though she never finishes them, I do try to get some of

>it down. She's off to physiotherapy again tomorrow which is good because

>her neck has really been troubling her and it worries me. Some days she is

>fine, and other days (more of those days unfortunately) she battles.

>

>I'm on leave for the next three weeks and I plan to be spending a lot of

>valuable time with her - something that is very precious to us working

>moms.

>I'm also off to the organic flea market to see if I can't find some oils or

>things like that to help relax her and perhaps to use in the bath.

>

>If I don't get a chance to read anymore from you guys please have a

>wonderfull Christmas and a fantabulous New Year's Eve.

>

>I guess I'll see you all next century then!

>

>thanks and regards

>

>Ady Ogilvie

>M-Net Marketing

>aogilvie@...

>

>

> > Re: [ ] Catching up

> >

> > From: Georgina <gmckin@...>

> >

> > Hi Kim,

> >

> > Great to hear from you. And I'm glad you had a bit of good news

> > yesterday, at the appt. Everybody responds differently to the various

> > NSAID's, so I'm glad you've already found one that works well for Casey.

> > The iron and calcium supplements sound like a good idea, too. Since you

> > won't know for sure until Thursday, I'm assuming your daughter had some

> > blood work done. If so, be sure to ask the nurse or doctor about the SED

> > rate, the hemoglobin value, and the white blood cell count. These are

> > some pretty good clinical markers of the activity level of JRA. If her

> > SED rate is very high, they may mention the possibility of starting

> > prednisone`to further reduce some inflammation. If so, your daughter's

> > appetite may pick up considerably.

> >

> > When my son first got sick, one of the scary parts was that he lost all

> > interest in food. He lost a lot of weight and it was a real challenge to

> > see that he ate at least a couple portions of healthy food throughout

> > the day. When he went into the hospital he was fed intravenously and

> > even that didn't bother him. He had no interest at all in eating until a

> > few days after they started giving him prednisone. Then, all of a sudden

> > he started requesting foods. He'd eat whatever was brought in during

> > mealtimes and then ask for other things, as well. It was really amazing.

> > He started to regain all his lost weight and then he gained even more.

> > He started filling in again, so you couldn't see the little rib bones

> > anymore. And he regained the healthy glow, that had disappeared when he

> > first got JRA. If steroids could have been a short term thing, there's

> > lots of benefits. I'm only upset wit it because Josh has needed to take

> > it for so long, as there are risks of side effects after long term use,

> > but it did help him so much in those early stages.

> >

> > Give Casey a big, gentle hug from us! And let us know what they say on

> > Thursday, when you have a chance.

> >

> > Much Aloha,

> > Georgina

> >

> >

>

[Guest guest]

Hi ,

Oh, that must have worried you so much. I'm so glad it was just a 24

hour thing. Never can tell though, what may or may not set off another

flare. I'm glad 's doing okay again.

I can definitely relate to all the talk about a child being finicky

about eating. If it weren't for Josh still being on a relatively high

dose of prednisone, I'm sure we'd be in the same boat.

Take care,

Georgina

SHANNON MARTINO wrote:

> hello I have a lot of problems with as well getting her to eat enough

> I should say she went to the doctor for vomiting and a headache yesterday

> ,and they weighed her she is back down to 31lb it seems to be a never ending

> battle > other then that she is doing ok the head ache scared me a lot she

> was in so much pain she just lounged there and threw up and she would just

> leigh back down and hold her head it only lasted 24 hours so it must have

> been a bug but I was so worried that she was going to go into a big flare

> and or get real sick it seems ever since she has gotten jra every little

> thing sends me into a panic well see you

>

> >From: Adrienne Ogilvie <aogilvie@...>

> >Hi everyone

> >

> >My has also gone off her food in a big way these past few weeks - it

> >seems to be a problem that is fairly general with JRA. I usually talk her

> >through her meals, though she never finishes them, I do try to get some of

> >it down. She's off to physiotherapy again tomorrow which is good because

> >her neck has really been troubling her and it worries me. Some days she is

> >fine, and other days (more of those days unfortunately) she battles.

> >

> >I'm on leave for the next three weeks and I plan to be spending a lot of

> >valuable time with her - something that is very precious to us working

> >moms.

> >I'm also off to the organic flea market to see if I can't find some oils or

> >things like that to help relax her and perhaps to use in the bath.

> >

> >If I don't get a chance to read anymore from you guys please have a

> >wonderfull Christmas and a fantabulous New Year's Eve.

> >

> >I guess I'll see you all next century then!

> >

> >thanks and regards

> >

> >Ady Ogilvie

> >M-Net Marketing

> >aogilvie@...

> >

> >

> > > Re: [ ] Catching up

> > >

> > > From: Georgina <gmckin@...>

> > >

> > > Hi Kim,

> > >

> > > Great to hear from you. And I'm glad you had a bit of good news

> > > yesterday, at the appt. Everybody responds differently to the various

> > > NSAID's, so I'm glad you've already found one that works well for Casey.

> > > The iron and calcium supplements sound like a good idea, too. Since you

> > > won't know for sure until Thursday, I'm assuming your daughter had some

> > > blood work done. If so, be sure to ask the nurse or doctor about the SED

> > > rate, the hemoglobin value, and the white blood cell count. These are

> > > some pretty good clinical markers of the activity level of JRA. If her

> > > SED rate is very high, they may mention the possibility of starting

> > > prednisone`to further reduce some inflammation. If so, your daughter's

> > > appetite may pick up considerably.

> > >

> > > When my son first got sick, one of the scary parts was that he lost all

> > > interest in food. He lost a lot of weight and it was a real challenge to

> > > see that he ate at least a couple portions of healthy food throughout

> > > the day. When he went into the hospital he was fed intravenously and

> > > even that didn't bother him. He had no interest at all in eating until a

> > > few days after they started giving him prednisone. Then, all of a sudden

> > > he started requesting foods. He'd eat whatever was brought in during

> > > mealtimes and then ask for other things, as well. It was really amazing.

> > > He started to regain all his lost weight and then he gained even more.

> > > He started filling in again, so you couldn't see the little rib bones

> > > anymore. And he regained the healthy glow, that had disappeared when he

> > > first got JRA. If steroids could have been a short term thing, there's

> > > lots of benefits. I'm only upset wit it because Josh has needed to take

> > > it for so long, as there are risks of side effects after long term use,

> > > but it did help him so much in those early stages.

> > >

> > > Give Casey a big, gentle hug from us! And let us know what they say on

> > > Thursday, when you have a chance.

> > >

> > > Much Aloha,

> > > Georgina

> > >

> > >

> >

>

>

[Guest guest]

Its called cyber-squatting and I think its illegal.

sam

> >

> Charley, I contacted the owner of 'antidepressantfacts.com', which

he has owned for over a year now, and he is waiting for a drug

company (like Pfizer) to come along and pick it up for $10,000 to

$20,000. I told him of our site and he is not willing to come down

on price. He sympathizes with us but 'needs the money'>

[Guest guest]

June,

I¹m sorry to hear about Don. He will be in my prayers. It¹s really hot

here too, high 90¹s all week

with no break in sight. I¹m surprised it gets that hot in Canada. Glad you

got air!

a

> First I would like to welcome all the new members that I may have missed. Don

> has been having some heart problems so have not had as much time on the

> computer but I have been trying to read some mail each day. It is 90 degrees

> here today and very humid,thank goodness for central air.

>

> Hugs

> June

[Guest guest]

<< I felt fairly well the whole time I was gone and tried to keep my pain

meds from wearing off just so I would feel ok.>>

I have to do that when I travel, too. I don't use them all the time, but

when I know I'm going to do a lot of walking I make sure I take one. I hate

having to do it, but it's the only way I can make it through the trip and

have some quality of life.

Glad you had a nice time, Gail!

Hugs,

Carol

[ ] Catching Up

Hi group,

I got back yesterday from my mini-vacation and it did do me good to get

away for awhile. I felt fairly well the whole time I was gone and tried to

keep my pain meds from wearing off just so I would feel ok. Seems like all I

did was pop pills.....But I also take several single vitamins too. I walked

more than I can remember walking in a long time...going to stores and flea

markets.

It's good to be back and catching up on my 202 emails I had waiting on me.

Wishing everyone a good nights rest.

~*~ Gail ~*~ ( in Al )

[Guest guest]

<PRE>good to hear from you stacey. hang in there. kathy in il

[Guest guest]

Stacey, I'm happy to hear from you!

What sort of further tests did your rheumatologist order? I'm worried

that your edema is still so severe. Did he think that possibly the

Remicade has something to do with it? The whole thing has me wondering,

especially since you said before that your mother thought you seemed to

be swollen all over.

I'm happy Halloween is over, too. I'm beginning to detest it. Are kids

today really ruder or am I getting old and cranky?

Good luck with the guinea pig caper.

I, for one, enjoy reading your novels.

[ ] catching up

> Hi All,

> I am trying to catch up with the emails. I have been so busy lately,

I

> haven't been keeping up as I normally would. I went to the rheumy

yesterday.

> My labs look pretty good. My liver enzymes were elevated by 1 point.

Other

> than that, everything looked ok. Normal for me anyway. Dr Seaman

said that

> after my next Remicade infusion, I could lower my mtx to 20mg/week,

then

> after a while 15mg/week, etc.... if everything goes well enough. My

weight

> seems to have leveled off for now. Only a 2 lb gain instead of 10 or

15. He

> does seem concerned about my lower legs, ankles and feet swelling.

This has

> been giving me a lot of trouble lately. I'm finding it hard to walk

or stand

> for any period of time because of the pain. So he gave me more labs

to be

> done. I have had a nagging cold for about a week now. It seems to be

> letting up a little now though.

> We have made it through the trick or treating for this year. (With a

little

> help from my mom.) Thank goodness that's over. Now we have tons of

candy to

> munch on. My car has clunked out again. The battery keeps going dead

on me.

> So it is in the shop again. The count is now 3 batteries and 1

alternator

> in 2 months. So I am again relying on others for transportation.

> I had my mammo last week and was able to speak to the radiologist

right

> after. He said that it was normal and that if the problems persisted

he

> would suggest a ductogram. This is a procedure that involves

injecting dye

> into the ducts and then scanning to see which one is leaking fluid and

why.

> I politely declined. I'm sure you can guess why. The mammo tech said

that

> the discoloration looked like broken bIood vessels. Duh! Isn't that

a nice

> word for bruising? had to cancel the gyne appt because of the car

situation

> and plan to reschedule as soon as the prob is fixed.

> Wyatt is doing well. We are having some problems with him cleaning up

after

> himself. He is asking for a guinea pig. I explained to him that if

he shows

> me that he can be responsible and pick up after himself that we would

go and

> look at them. I think that it would be good for him to have his own

pet. He

> wanted a rabbit, but I explained to him that they are really not good

pets

> for children. I also explained that if we were going to bring another

animal

> into the house, that we would need to get rid of one that is already

here and

> the cats are not an option. So we settled on dismantling one of the

> aquariums. We have 2 of them and guess whose gets to be taken down.

You're

> right. Mine. It's ok. I've been thinking about it for a while now.

It is

> a bigger tank and takes more work. We are going to give the fish to a

friend

> and store the tank in the basement so we can put it up again some

other time.

> Yeah right!!

> Well, this has turned into a novel. Time to cut it short. Just

wanted to

> update everyone. Please be patient as I am still going through the

emails

> and it takes a while.

> Love and Hugs

> Stacey in PA

[Guest guest]

Hi Stacey!

It's good to see you posting, and I'm glad you're doing pretty well. I do

hope the swelling goes down soon.

Much love,

Carol

[ ] catching up

Hi All,

I am trying to catch up with the emails. I have been so busy lately, I

haven't been keeping up as I normally would. I went to the rheumy

yesterday.

My labs look pretty good. My liver enzymes were elevated by 1 point. Other

than that, everything looked ok. Normal for me anyway. Dr Seaman said that

after my next Remicade infusion, I could lower my mtx to 20mg/week, then

after a while 15mg/week, etc.... if everything goes well enough. My weight

seems to have leveled off for now. Only a 2 lb gain instead of 10 or 15.

He

does seem concerned about my lower legs, ankles and feet swelling. This has

been giving me a lot of trouble lately. I'm finding it hard to walk or

stand

for any period of time because of the pain. So he gave me more labs to be

done. I have had a nagging cold for about a week now. It seems to be

letting up a little now though.

We have made it through the trick or treating for this year. (With a little

help from my mom.) Thank goodness that's over. Now we have tons of candy

to

munch on. My car has clunked out again. The battery keeps going dead on

me.

So it is in the shop again. The count is now 3 batteries and 1 alternator

in 2 months. So I am again relying on others for transportation.

I had my mammo last week and was able to speak to the radiologist right

after. He said that it was normal and that if the problems persisted he

would suggest a ductogram. This is a procedure that involves injecting dye

into the ducts and then scanning to see which one is leaking fluid and why.

I politely declined. I'm sure you can guess why. The mammo tech said that

the discoloration looked like broken bIood vessels. Duh! Isn't that a nice

word for bruising? had to cancel the gyne appt because of the car

situation

and plan to reschedule as soon as the prob is fixed.

Wyatt is doing well. We are having some problems with him cleaning up after

himself. He is asking for a guinea pig. I explained to him that if he

shows

me that he can be responsible and pick up after himself that we would go and

look at them. I think that it would be good for him to have his own pet.

He

wanted a rabbit, but I explained to him that they are really not good pets

for children. I also explained that if we were going to bring another

animal

into the house, that we would need to get rid of one that is already here

and

the cats are not an option. So we settled on dismantling one of the

aquariums. We have 2 of them and guess whose gets to be taken down. You're

right. Mine. It's ok. I've been thinking about it for a while now. It is

a bigger tank and takes more work. We are going to give the fish to a

friend

and store the tank in the basement so we can put it up again some other

time.

Yeah right!!

Well, this has turned into a novel. Time to cut it short. Just wanted to

update everyone. Please be patient as I am still going through the emails

and it takes a while.

Love and Hugs

Stacey in PA

[Guest guest]

In a message dated 5/12/03 3:29:45 PM Eastern Daylight Time,

cdyost@... writes:

> COST -- I cannot afford Enbrel as my insurance only pays about half of my

> prescriptions and I pay about $400 per month now so if Enbrel was added my

> costs would jump to about $1100 per month. I will look for better

> insurance but am uncertain of the future of health coverage for meds.

>

>

Cheri,

Enbrel has a program now that will cover the cost if you cannot afford it.

If you are interested you may want to call them. I understand that it only

takes a 5 minute call and the provide you with a months worth a time free of

charge.

[Guest guest]

I take ambien, and feel a bit drowsy for an hour after waking. I didn't

sleep well though the nights either before treatments, but the ambien has

worked for me. I still wake up a few times a night, but go right back to

sleep. But one of the side effects from it is short term memory. I haven't

been affected much, or it is part that and treatments.

[ ] catching up

Hi Everyone,

I have not been around in a while because of work but just want to

say that I hope everyone is well. Tammie and Lynn, I'm glad to hear

you're still hanging in there with the treatment. I will be starting

end of April. Marie, I hope you're doing ok, I am thinking of

you.

I do have a question about sleeping. I don't know about anyone else

but I don't sleep. I am not on tx yet, but I don't think I ever get

through a night without getting up at least 4 times. Sometimes I

just watch tv for a little bit. My doctor gave me some ambien but I

have to get up for work at 5:30 a.m. and I'm kind of afraid that I

will be out of it all day. Does anyone take Ambien? If so, how do

you feel the next day?

One more thing, I know they say that you get 'brain fog' but is that

with the tx or just in general with Hep C? I can't imagine being

worse than this. I am CONSTANTLY doing stupid things all the time.

The other day my Mom was holding my baby and she was getting ready to

take him out and I had his little hat in my hand and I started to put

the hat on my mom's head instead of the baby. My mom didn't say

anything but just looked at me real funny. I just started laughing

when I realized what I was doing. But I do that kind of stuff all

the time, or I forget my passwords at work or how to do things that I

have done a million times. Very frustrating.

sorry so long.

Chris

[Guest guest]

DZ:

Be honest there was probably alot of time when the wife didn't want to be round you. or maybe it was just mine lol

Remember, if you haven't got a smile on your face and laughter in your heart......Then you are just an old sour fart.Eddie

[Guest guest]

Hi ,

I don't know about the Ambien.I can tell you that a side I am

experiencing is insomnia.I just rest when I can.I have 3 children to

look after and I don't want sleep aids.But,if my situation were

differant;I'd have them.

And the brain fog-----I can't vouch for everyone,but I certainly am

having that one.Last week I hid an envelope of cash away and could

not find it for 2 days.I remembered putting it away--just not where

exactly.

When do you think you'll start tx ??

> Hi Everyone,

> I have not been around in a while because of work but just want to

> say that I hope everyone is well. Tammie and Lynn, I'm glad to

hear

> you're still hanging in there with the treatment. I will be

starting

> end of April. Marie, I hope you're doing ok, I am thinking of

> you.

> I do have a question about sleeping. I don't know about anyone

else

> but I don't sleep. I am not on tx yet, but I don't think I ever

get

> through a night without getting up at least 4 times. Sometimes I

> just watch tv for a little bit. My doctor gave me some ambien but

I

> have to get up for work at 5:30 a.m. and I'm kind of afraid that I

> will be out of it all day. Does anyone take Ambien? If so, how do

> you feel the next day?

> One more thing, I know they say that you get 'brain fog' but is

that

> with the tx or just in general with Hep C? I can't imagine being

> worse than this. I am CONSTANTLY doing stupid things all the

time.

> The other day my Mom was holding my baby and she was getting ready

to

> take him out and I had his little hat in my hand and I started to

put

> the hat on my mom's head instead of the baby. My mom didn't say

> anything but just looked at me real funny. I just started laughing

> when I realized what I was doing. But I do that kind of stuff all

> the time, or I forget my passwords at work or how to do things that

I

> have done a million times. Very frustrating.

>

> sorry so long.

> Chris

[Guest guest]

I haven't had a problem with the ambian. It makes me sleepy to go to sleep,

but if a pin drops I hear it and I am up instantly. The difference has been

being able to go back to sleep after waking in the middle of the night.

Before I would wake up and be up for hours, talk about cranky. I think this

is one of the reason they prescribe ambian over other medications, it only

helps you fall asleep so you get a good nights rest, it doesn't put you into

a coma like other sleep aids do. I still get up between 3 to 4 times each

night.

I am with you on the sleep when you can, I still go to work and come

straight home and sleep for an hour or so.

[ ] Re: catching up

Hi ,

I don't know about the Ambien.I can tell you that a side I am

experiencing is insomnia.I just rest when I can.I have 3 children to

look after and I don't want sleep aids.But,if my situation were

differant;I'd have them.

And the brain fog-----I can't vouch for everyone,but I certainly am

having that one.Last week I hid an envelope of cash away and could

not find it for 2 days.I remembered putting it away--just not where

exactly.

When do you think you'll start tx ??

> Hi Everyone,

> I have not been around in a while because of work but just want to

> say that I hope everyone is well. Tammie and Lynn, I'm glad to

hear

> you're still hanging in there with the treatment. I will be

starting

> end of April. Marie, I hope you're doing ok, I am thinking of

> you.

> I do have a question about sleeping. I don't know about anyone

else

> but I don't sleep. I am not on tx yet, but I don't think I ever

get

> through a night without getting up at least 4 times. Sometimes I

> just watch tv for a little bit. My doctor gave me some ambien but

I

> have to get up for work at 5:30 a.m. and I'm kind of afraid that I

> will be out of it all day. Does anyone take Ambien? If so, how do

> you feel the next day?

> One more thing, I know they say that you get 'brain fog' but is

that

> with the tx or just in general with Hep C? I can't imagine being

> worse than this. I am CONSTANTLY doing stupid things all the

time.

> The other day my Mom was holding my baby and she was getting ready

to

> take him out and I had his little hat in my hand and I started to

put

> the hat on my mom's head instead of the baby. My mom didn't say

> anything but just looked at me real funny. I just started laughing

> when I realized what I was doing. But I do that kind of stuff all

> the time, or I forget my passwords at work or how to do things that

I

> have done a million times. Very frustrating.

>

> sorry so long.

> Chris

[Guest guest]

Thanks everyone for the replies. I have always had bouts of insomnia

but I think lately it has gotten worse because I am worrying about

the upcoming treatment. Tammie, I have an appt 4/6/04 with the

gastro to discuss the tx and then I guess its just a matter of

waiting for the authorization of the meds to go through and then I

start. I want you and Lynne to know that reading your posts has made

me decide to do the tx. I was off and on and not sure about what to

do, but the two of you should be very proud of yourself. You both

seem to be handling things very well and it has given me hope. I too

have children, one of them just started walking, so that is my

biggest concern right now. Will I be able to enjoy him like he

deserves to be or will I be a raging lunatic and annoyed most of the

time.

Ester, I hope your blood work comes out good, please let us know.

Thank you for the advice about Trazadone, my doctor only gave me

about 10 ambien because he did say it was addictive so I will talk to

him about the other medication.

Have a good day everyone.

Chris

> > Hi Everyone,

> > I have not been around in a while because of work but just want

to

> > say that I hope everyone is well. Tammie and Lynn, I'm glad to

> hear

> > you're still hanging in there with the treatment. I will be

> starting

> > end of April. Marie, I hope you're doing ok, I am thinking

of

> > you.

> > I do have a question about sleeping. I don't know about anyone

> else

> > but I don't sleep. I am not on tx yet, but I don't think I ever

> get

> > through a night without getting up at least 4 times. Sometimes I

> > just watch tv for a little bit. My doctor gave me some ambien

but

> I

> > have to get up for work at 5:30 a.m. and I'm kind of afraid that

I

> > will be out of it all day. Does anyone take Ambien? If so, how

do

> > you feel the next day?

> > One more thing, I know they say that you get 'brain fog' but is

> that

> > with the tx or just in general with Hep C? I can't imagine being

> > worse than this. I am CONSTANTLY doing stupid things all the

> time.

> > The other day my Mom was holding my baby and she was getting

ready

> to

> > take him out and I had his little hat in my hand and I started to

> put

> > the hat on my mom's head instead of the baby. My mom didn't say

> > anything but just looked at me real funny. I just started

laughing

> > when I realized what I was doing. But I do that kind of stuff

all

> > the time, or I forget my passwords at work or how to do things

that

> I

> > have done a million times. Very frustrating.

> >

> > sorry so long.

> > Chris

[Guest guest]

I've been sick as a dog for the past 36 - 48 hours, I was tempted to stay home today, but I'm forcing myself. We're getting bought out by a larger company, and they always seem to want to look at the IT staff as a likely place to cut meat. We have our IT department and they have theirs, and they usually figure there is some duplication of effort going on there. Being that I am an appliation programmer (as opposed to corporate stuff, like payroll, finance, etc.) I should be a litle safer than most, but you just never know in todays climate. They'd fire me and then find out they couldn't get on without me, but would rather spend thousands of hours recreating what I've done than admit their mistake and hire me back. I know I spent thousands of hours re creating the project that I am now the expert on. Anyway, hope everybody is doing well. It's still snowing like crazy, we've managed to stay above zero. -dz-

[Guest guest]

That was a problem with me throughout. I actually asked my wife not to come to be with me if I was already sleeping, because, as you said, the trick was more in staying asleep through the night than just falling asleep. Anytime I woke up. I had my book at the ready, because I knew it was going to be a couple of more hours. -dz-

-----Original Message-----From: Lynne Dunham [mailto:lynne@...]Sent: Tuesday, February 10, 2004 5:35 AM Subject: RE: [ ] Re: catching upI haven't had a problem with the ambian. It makes me sleepy to go to sleep,but if a pin drops I hear it and I am up instantly. The difference has beenbeing able to go back to sleep after waking in the middle of the night.Before I would wake up and be up for hours, talk about cranky. I think thisis one of the reason they prescribe ambian over other medications, it onlyhelps you fall asleep so you get a good nights rest, it doesn't put you intoa coma like other sleep aids do. I still get up between 3 to 4 times eachnight.I am with you on the sleep when you can, I still go to work and comestraight home and sleep for an hour or so.-----Original Message-----From: Tammie [mailto:beachbrat5@...]Sent: Tuesday, February 10, 2004 6:19 AM Subject: [ ] Re: catching upHi ,I don't know about the Ambien.I can tell you that a side I amexperiencing is insomnia.I just rest when I can.I have 3 children tolook after and I don't want sleep aids.But,if my situation weredifferant;I'd have them.And the brain fog-----I can't vouch for everyone,but I certainly amhaving that one.Last week I hid an envelope of cash away and couldnot find it for 2 days.I remembered putting it away--just not whereexactly.When do you think you'll start tx ??> Hi Everyone,> I have not been around in a while because of work but just want to> say that I hope everyone is well. Tammie and Lynn, I'm glad tohear> you're still hanging in there with the treatment. I will bestarting> end of April. Marie, I hope you're doing ok, I am thinking of> you.> I do have a question about sleeping. I don't know about anyoneelse> but I don't sleep. I am not on tx yet, but I don't think I everget> through a night without getting up at least 4 times. Sometimes I> just watch tv for a little bit. My doctor gave me some ambien butI> have to get up for work at 5:30 a.m. and I'm kind of afraid that I> will be out of it all day. Does anyone take Ambien? If so, how do> you feel the next day?> One more thing, I know they say that you get 'brain fog' but isthat> with the tx or just in general with Hep C? I can't imagine being> worse than this. I am CONSTANTLY doing stupid things all thetime.> The other day my Mom was holding my baby and she was getting readyto> take him out and I had his little hat in my hand and I started toput> the hat on my mom's head instead of the baby. My mom didn't say> anything but just looked at me real funny. I just started laughing> when I realized what I was doing. But I do that kind of stuff all> the time, or I forget my passwords at work or how to do things thatI> have done a million times. Very frustrating.>> sorry so long.> Chris

[Guest guest]

If you're not taking anti-depressants yet;you may want to dicuss it

with your doc now.And if you decide to have some,I believe that the

earlier you begin to take them(before tx)and it has time to start to

work itself into your system and you get use to it------the better.

My children are 10,8,and 4.All boys.I was like you.I don't want to be

a mean mom.And the meds help.The ribavirin I take in the evening are

the only things that bother me.I started taking them later

(thanks,Lynne)in the evening.And I need to get rid of this dragon.I

intend to whip it's butt all the way down to the ground.I don't want

to ever stop tx and end up sicker or even starting over.

If a job is once begun

Never leave it til it's done

Be the labor great or small

DO IT WELL

OR NOT AT ALL.....

> > > Hi Everyone,

> > > I have not been around in a while because of work but just want

> to

> > > say that I hope everyone is well. Tammie and Lynn, I'm glad to

> > hear

> > > you're still hanging in there with the treatment. I will be

> > starting

> > > end of April. Marie, I hope you're doing ok, I am

thinking

> of

> > > you.

> > > I do have a question about sleeping. I don't know about anyone

> > else

> > > but I don't sleep. I am not on tx yet, but I don't think I

ever

> > get

> > > through a night without getting up at least 4 times. Sometimes

I

> > > just watch tv for a little bit. My doctor gave me some ambien

> but

> > I

> > > have to get up for work at 5:30 a.m. and I'm kind of afraid

that

> I

> > > will be out of it all day. Does anyone take Ambien? If so,

how

> do

> > > you feel the next day?

> > > One more thing, I know they say that you get 'brain fog' but is

> > that

> > > with the tx or just in general with Hep C? I can't imagine

being

> > > worse than this. I am CONSTANTLY doing stupid things all the

> > time.

> > > The other day my Mom was holding my baby and she was getting

> ready

> > to

> > > take him out and I had his little hat in my hand and I started

to

> > put

> > > the hat on my mom's head instead of the baby. My mom didn't

say

> > > anything but just looked at me real funny. I just started

> laughing

> > > when I realized what I was doing. But I do that kind of stuff

> all

> > > the time, or I forget my passwords at work or how to do things

> that

> > I

> > > have done a million times. Very frustrating.

> > >

> > > sorry so long.

> > > Chris