Gabs

[Guest guest]

Hi Tammy,

Hang in there - there is nothing weak about suffering when our kids are

suffering. You're in our thoughts and prayers.

Val

Rob's Mom (4, systemic)

In a message dated Thu, 18 Oct 2001 7:40:19 PM Eastern Daylight Time, pablo

cruise <nikki228@...> writes:

> Hi All...Gabby has started back on the meds. She's

> complained of the inside of her feet hurting as well

> as her knees. I thought we were all done with this,

> but can see we're not. I'm thankful to God that she's

> not as bad as some kids, but I wish sometimes I could

> get inside her little body and feel how she feels.

> What seems " normal " to her, might be pain, since she's

> had JRA since she was 2 years old. This might be all

> she's ever known. She needs help rising from a

> sitting or down position and had to be carried today

> since her " legs hurt her bad " , as she puts it. I

> agreed to put her back on the motrin, double dose 3X a

> day, but couldn't bring myself to have her have

> another blood test just yet to be put on the

> indomethacin that makes her sick. *sigh* I think

> it's harder on us than the kids sometimes. They are

> the strong ones. I'm feeling weak. Thanks for listening....Tammy

>

> __________________________________________________

>

[Guest guest]

Dear Tammy,

You're not weak--just a loving mother. It's hard to watch them do so

well then the slightest little thing comes back--and it's almost makes

you feel worse than when everything is acting up. Kate had a remission

while on Methotrexate--it was pure heaven! But when she had to be pulled

from it due to adverse reactions to it--she went back to the way she was

and I think I felt almost worse then--(then when they first dx. her!) I

feel like this jra likes to tease us all. I hope things get better and

you'll both be in our thoughts and prayers.

and Kate

[Guest guest]

Dear Tammy , I was six years old and had developed a really ummm ...creative way of walking ...noone I mean noone knew what was wrong with me for two year. At age eight, I was scheduled for exploratory surgery to try to diagnose my problem. I spent the most of one whole summer in a children's hospital being observed and poke and proded, using traction and exercise and bed rest and everything under the sun to try to help. Finally a teaching doctor at the university was called in and he knew at one glance what it was ...JRA You see up to that point I was having pain enough to develope my own way of walking and until this orthopedic doctor put me on 40 aspirin a day was I pain free and found out that other people didn't feel the same way I did when they walked. But I was a little girl full of life and mischief and smiles and yes I understood that a bee sting would hurt me but I had no idea that everyone else's walking around didn't feel the same way I did when I walked. ( I know this is thick as mud) My point is ...children are oh so resilient and I have to agree with you that although there are times when you can see Gabby obviously in pain or compensating for pain, It may be that's its worse for you to deal with then her. I remember that I would be asleep in my bedroom and apparently would moan or whimper as I turned or was just asleep and in pain , it didn't wake me.....but it woke my mom !!! She'd come to my side and softly say what's hurting and I would only then wake to realize it was a knee or whatever !!! She then would bring meds and a heating pad and pillows to prop me and I would sink back into sleep and bebop off to school the next morn as if nothing at all had happened. So I grew up with the attitude....it hurts, you do what you have to to make it feel better and you resume "normal" So bless you for being that caring mom that helps her gabs rising from a sitting position and would probably trade places with gabby at any time. I often say, if I had to have this disease thank you God for giving it to me young . I've learned life through the eyes of a JRAer and that's a special road to travel. Some people only see the pain , limitations, traumatic experiences to this road but I learned very very young that I can turn any of those experience into something positive. I meet my limitations and I creatively work my way around them, I conquer my pain, and learn that all can be overcome with perseverance and strength, I laugh at my trauma's like a person with not a care in the world. I see others through the eyes of compassion. So give yourself a break mom, gabby will do just fine with all the support and love you give her and please please take time to take care of yourself , even if it's just 15 minutes a day , take time for yourself! You 'd be amazed to see what a few short minutes everyday will do to refill your reserves... and let you feel stronger!!!!! KEEP SMILIN :):):)Tree Gabs Hi All...Gabby has started back on the meds. She'scomplained of the inside of her feet hurting as wellas her knees. I thought we were all done with this,but can see we're not. I'm thankful to God that she'snot as bad as some kids, but I wish sometimes I couldget inside her little body and feel how she feels.What seems "normal" to her, might be pain, since she'shad JRA since she was 2 years old. This might be allshe's ever known. She needs help rising from asitting or down position and had to be carried todaysince her "legs hurt her bad", as she puts it. Iagreed to put her back on the motrin, double dose 3X aday, but couldn't bring myself to have her haveanother blood test just yet to be put on theindomethacin that makes her sick. *sigh* I thinkit's harder on us than the kids sometimes. They arethe strong ones. I'm feeling weak. Thanks for listening....Tammy__________________________________________________

[Guest guest]

Dear and Kate, I too enjoyed six weeks of remission thanks to embrel, but my body then built antibodies to the embrel and we mixed metho with it. my sed rate lowered a little again but then climbed once more we then mix in pred. and celebrex for swelling I couldn't seem to wake without.... sed rate was hovering around 75. I was very depressed at this point because I truely felt I'd wished I'd never had the remission experience, for now I had a different standard to compare my life too. So as I dealt with the loss of my fleeting remission like a part of me had died.... I then found out that my liver had been damaged and I was off all meds. This to me was like insult after injury.... I spent November to March with no medications not even a tylenol ....just to give my liver a chance to recooperate.. thank God it worked !!!! But it was the worst 4 months I'd ever had and I don't think I would have survived if it hadn't been for my FACES friends!!I've dealt with it and have moved on.. and now when I look back I remember the great things that happened in that six weeks of remmission. I fondly now have named that time in my life my superwoman phase lol !!! Keep Smilin:):):)Tree:):) Re: Gabs Dear Tammy,You're not weak--just a loving mother. It's hard to watch them do sowell then the slightest little thing comes back--and it's almost makesyou feel worse than when everything is acting up. Kate had a remissionwhile on Methotrexate--it was pure heaven! But when she had to be pulledfrom it due to adverse reactions to it--she went back to the way she wasand I think I felt almost worse then--(then when they first dx. her!) Ifeel like this jra likes to tease us all. I hope things get better andyou'll both be in our thoughts and prayers. and KateFor links to websites about arthritis and JRA, visit:http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Dear Tree,

I'm glad your liver's fine as that was the main reason Kate had to be

pulled off the Methotrexate--her liver counts went sky high and they

were worried about liver damage. I read so many posts and the list of

meds these kids are on. Kate is currently on Enbrel, Ibuprofen and

Prilosec. While she's not gone into another remission--it has helped to

keep things " manageable " Our biggest problem is she's maxed out on

current meds and can't go into the steroids as she has the avascular

necrosis of both hips and the dr. says steroids and certain other meds

would make that worse. I can't complain as she's a real trooper and even

on " bad days " gives it her all! We do the ot and pt both at home and the

hospital, leg casts and hand splints and everything else we can think of

to help her. Lately we've had some scares with her left hip popping and

putting her in severe pain--had x-rays done and go to the dr. next week

(dr. wants chance to talk to therapist and orthopedic dr,) I think that

because she was dx. so young (3) and the remission came just before 4

that she might not have a good memory of it. But I always will. It had

to be one of the best 6 weeks of our lives!

and Kate

[Guest guest]

Dear Tree,

Just read this and oh! how you remind me of Kate! (that's a good thing

right? lol!)

[Guest guest]

hmmm Not sure I know who kate is????? but if she was long winded well ...:)what can I say ..I do what I gotta to get my point across hehehehehehe :)Tree:):) Re: Gabs Dear Tree,Just read this and oh! how you remind me of Kate! (that's a good thingright? lol!)

[Guest guest]

ok laura just ignore that last email I have trouble keeping kids and mom hooked together lol I realize now that kate is your daughter and the answer is yes she will be a JRA vet and we are a force to be reckoned with lol just ask Faces(donna), Rusty(donald) or any of the others and they would have to agree:):):)Tree:):) Re: Gabs Dear Tree,Just read this and oh! how you remind me of Kate! (that's a good thingright? lol!)

[Guest guest]

dear and Kate, I understand fully about the pred. use because I too limit it to the bare minimum of use. Like I said I had six weeks to feel like superwoman and then had to grieve it's loss, it may at this early age be a good thing that she doesn't remember the remission. I know that when I had never had a remission before I had nothing to compare my daily limitations and pain too, hence I was no spending time saying , why can't I or if only !!! I did after remission was over and it was a hard path to walk. I was diagnosed at 8 and never had remission, until I was 37. Do what you can to help Kate stay positive , teach her creative mangement of what ever is going on in her life. Teach her that brick walls are for climbing or walking around or tunnelling under , but never for stopping. :):)Tree:):) Re: Gabs Dear Tree,I'm glad your liver's fine as that was the main reason Kate had to bepulled off the Methotrexate--her liver counts went sky high and theywere worried about liver damage. I read so many posts and the list ofmeds these kids are on. Kate is currently on Enbrel, Ibuprofen andPrilosec. While she's not gone into another remission--it has helped tokeep things "manageable" Our biggest problem is she's maxed out oncurrent meds and can't go into the steroids as she has the avascularnecrosis of both hips and the dr. says steroids and certain other medswould make that worse. I can't complain as she's a real trooper and evenon "bad days" gives it her all! We do the ot and pt both at home and thehospital, leg casts and hand splints and everything else we can think ofto help her. Lately we've had some scares with her left hip popping andputting her in severe pain--had x-rays done and go to the dr. next week(dr. wants chance to talk to therapist and orthopedic dr,) I think thatbecause she was dx. so young (3) and the remission came just before 4that she might not have a good memory of it. But I always will. It hadto be one of the best 6 weeks of our lives! and Kate

[Guest guest]

Dear Tree,

No problem! I love your attitude dealing with this " stuff'. That's how

we try to raise Kate--with the philosophy that " it's a reason but not an

excuse " . I always tell her (along with my other girls) that " can't "

isn't in her vocabulary--but " will try " always is!

[Guest guest]

High five to Kate and u too mom :):)Tree:):):) Re: Gabs Dear Tree,No problem! I love your attitude dealing with this "stuff'. That's howwe try to raise Kate--with the philosophy that "it's a reason but not anexcuse". I always tell her (along with my other girls) that "can't"isn't in her vocabulary--but "will try" always is!

[Guest guest]

Tree,

I forgot to mention that I really appreciated your post about being a

survivor with JRA. Well put!

Elisheva

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Some people (soldiers) fight far off battles in foreign lands, Some people fight injustices, while others like our civil servants fight the battle s of the streets. Still others fight the ignorance and complacency of some of societies not so inclusive rules. Those with JRA and their families fight every year, everyday, sometimes every minute. How could that not mold you to be a certain type of person. One that wears many hats, one of which is "survivor" !As I go to Ajao conferences and meet more and more JRA young Adults, through the internet or FACES or networking with other young adult groups like FACES. The Survivor theory is proved over and over and over again! And although I don't know you very well Elisheva, I know enough to say that you prove my theory as well :) No matter the age, whether it's little rob age 4 fighting to make his pumpkin for his momma, Kate age 14 fighting to share her god given talent for dance, Elisheva 19 fighting to get through college, me now 40 fighting to unite JRAers and teach awareness of JRA, or my FACES friend Bobbi who is in her late forties, diagnosed a few years back now with RA, then FIBRO, and recently TMJ, we all fight our battles and survive the way that JRA has taught us!!!!!:):)Tree:):) re: Gabs Tree,I forgot to mention that I really appreciated your post about being asurvivor with JRA. Well put!Elisheva_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Tree,

You are always an inspiration. Thanks.

Val aka Vernie

Rob's Mom (4,systemic)

In a message dated Sun, 21 Oct 2001 7:34:13 PM Eastern Daylight Time, " theresa

sappenfield " <treesap0@...> writes:

> Some people (soldiers) fight far off battles in foreign lands, Some people

fight injustices, while others like our civil servants fight the battle s of the

streets. Still others fight the ignorance and complacency of some of societies

not so inclusive rules. Those with JRA and their families fight every year,

everyday, sometimes every minute. How could that not mold you to be a certain

type of person. One that wears many hats, one of which is " survivor " !As I go to

Ajao conferences and meet more and more JRA young Adults, through the internet

or FACES or networking with other young adult groups like FACES. The Survivor

theory is proved over and over and over again! And although I don't know you

very well Elisheva, I know enough to say that you prove my theory as well :)

No matter the age, whether it's little rob age 4 fighting to make his pumpkin

for his momma, Kate age 14 fighting to share her god given talent for dance,

Elisheva 19 fighting to get through college, me now 40 fighting to unite JRAers

a

nd teach awareness of JRA, or my FACES friend Bobbi who is in her late forties,

diagnosed a few years back now with RA, then FIBRO, and recently TMJ, we all

fight our battles and survive the way that JRA has taught

us!!!!!:):)Tree:):)

re: Gabs Tree,

> I forgot to mention that I really appreciated your post about being a

> survivor with JRA. Well put!

> Elisheva

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

,

When we were kids and said " can't " my Mom would always say " Knock out the " T "

and turn can't into can - Can't never could do anything.

Val

Rob's Mom (4,systemic)

In a message dated Sat, 20 Oct 2001 10:06:45 PM Eastern Daylight Time,

nLilly@... writes:

> Dear Tree,

> No problem! I love your attitude dealing with this " stuff'. That's how

> we try to raise Kate--with the philosophy that " it's a reason but not an

> excuse " . I always tell her (along with my other girls) that " can't "

> isn't in her vocabulary--but " will try " always is!

>

>

>

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

I wondered if anyone's child, who has Systemic JRA,

has had major problems this year with skin itching.

We've been putting 1% hydrocortisone cream on her

before bed/after her bath as well as in the mornings

before she gets dressed, but she's still itching

terribly. Her rash is all over her upper arms, chest

and back. This morning when I looked at her chest it

looked like she had been attacked by a kitten - there

were scratches all over it where she had itched

herself so badly in her sleep. We've tried Jergens

cream, Aveeno oatmeal baths...I'm at my wits end here!

Thanks!

Tammy

__________________________________________________

[Guest guest]

Dear Tammy, I had n read your email and asked her opinion. n,

age 12, has systemic JRA and had terrible itching with the rash. We have

tried lots of things. Benadryl did not work for us. We tried Zyrtec and

that didn't work. We tried all of the overthe counter creams. I changed

detergent to Dreft and changed soap to just a glycerin soap. n says

that Aveeno Itch cream helped a bit, and she would put ice blocks ( the kind

you would pack in a lunch) on her legs at night. The rheumy said he had

never had anyone with the itching, but it has been a major problem for us.

When her bottom itches she uses preparation h, and that seems to help.

After a year with the disease and major itching, she has now developed

exzema all over her body. So you may want to watch for that. We have a

steroid cream now, but it doesn't help too much. We have an appt. in 10

days with another dermatologist, and supposedly there is new medication on

the market that can work well for exzema that is not a steroid.

The dermatologist told us that hot baths are drying for the skin, so avoid

too hot of baths. Right when she gets out of the bath we have n

moisturize her skin with Aveeno or Lubriderm.

I know the itching is a major problem. n would miss school because of

the itching and she would cry and cry. It took us a long time, but it is

more manageable now. One doctor told us that n's arthritis was just

manifesting itself more on the skin than in the joints. She doesn't have

major joint pain or swelling. Let me know if you have more questions. Good

luck.

>From: pablo cruise <nikki228@...>

>Reply-

>

>Subject: Gabs

>Date: Sat, 27 Oct 2001 13:49:59 -0700 (PDT)

>

>I wondered if anyone's child, who has Systemic JRA,

>has had major problems this year with skin itching.

>We've been putting 1% hydrocortisone cream on her

>before bed/after her bath as well as in the mornings

>before she gets dressed, but she's still itching

>terribly. Her rash is all over her upper arms, chest

>and back. This morning when I looked at her chest it

>looked like she had been attacked by a kitten - there

>were scratches all over it where she had itched

>herself so badly in her sleep. We've tried Jergens

>cream, Aveeno oatmeal baths...I'm at my wits end here!

>Thanks!

>Tammy

>

>__________________________________________________

>

[Guest guest]

Tammy,

Any chance you're dealing with allergies rather than JRA related itching? My

19 yr old, who doesn't have JRA, has extremely sensitive skin and also used

to have terrible problems with itching. She is very limited in types of soap

she can use. Dove is one of the few she can use. We took her to a

dermatologist many years ago becuase this was such a problem. To this day

she knows right away if she has used the wrong soap!

Liz

Gabs

> I wondered if anyone's child, who has Systemic JRA,

> has had major problems this year with skin itching.

> We've been putting 1% hydrocortisone cream on her

> before bed/after her bath as well as in the mornings

> before she gets dressed, but she's still itching

> terribly. Her rash is all over her upper arms, chest

> and back. This morning when I looked at her chest it

> looked like she had been attacked by a kitten - there

> were scratches all over it where she had itched

> herself so badly in her sleep. We've tried Jergens

> cream, Aveeno oatmeal baths...I'm at my wits end here!

> Thanks!

> Tammy

>

> __________________________________________________

>

[Guest guest]

Rob has had some itching - but it doesn't sound the same. He has about 3 - 4

round rash marks on each limb (they ruled everything from chicken pox to who

knows what) the hydrocortisone cream helped so they are finally healing (after 6

weeks) - but I actually think that the weather changing and him going into long

sleeves and pants helped too.

Val

In a message dated Sat, 27 Oct 2001 4:50:57 PM Eastern Daylight Time, pablo

cruise <nikki228@...> writes:

> I wondered if anyone's child, who has Systemic JRA,

> has had major problems this year with skin itching.

> We've been putting 1% hydrocortisone cream on her

> before bed/after her bath as well as in the mornings

> before she gets dressed, but she's still itching

> terribly. Her rash is all over her upper arms, chest

> and back. This morning when I looked at her chest it

> looked like she had been attacked by a kitten - there

> were scratches all over it where she had itched

> herself so badly in her sleep. We've tried Jergens

> cream, Aveeno oatmeal baths...I'm at my wits end here!

> Thanks!

> Tammy

>

> __________________________________________________

>

[Guest guest]

Tammy,

I have eczema on my hands - and used to get really bad flare-ups where my

fingers would eventually crack and bleed so much that I could barely move them.

I used a strong prescribed steriod cream when really bad - and that cleared it

up. The doctor also gave Eucerine cream (not lotion - it is in a little tub,

not a bottle) which I rub heavily on my hands and then wear gloves and that

keeps my skin really moist. I have to keep my hands out of hot water (I use

rubber gloves all of the time) - when it was really bad I used them a few times

even when bathing Rob (he hated that!) - though don't need to now - but still do

when doing dishes and cleaning. I think one of the things that has helped with

the rest of my skin is immediately after a shower, when my skin is still damp in

the shower I rub baby oil on and rub it in with the towel while I dry (can be

really messy - but worth the difference it makes on my itchy skin. I just

bought some of the new baby oil gel - to see if that is less messy. good luck -

I

hope you find something that helps her soon.

Val

Rob's Mom (4,systemic)

In a message dated Sun, 28 Oct 2001 9:41:54 PM Eastern Standard Time, pablo

cruise <nikki228@...> writes:

> Georgia; Liz & ;

>

> Thanks so much for your prompt responses to my email.

> She was tested for allergies prior to the systemic JRA

> diagnosis and didn't have any. I think there is a

> possibility of the eczema since our oldest daughter

> does as well. We already use Dove for sensitive skin

> since that's the only one our eldest daughter can use,

> but the itching rash isn't all the time. It's usually

> preceeded by the " I'm not eating for 3-4 days " or like

> tonight she said before bathtime " Mama, the inside of

> my knees have boo-boos again " . This morning she slept

> until 9am, which is very unlike Gabbers, plus she

> tripped 3 times going down the steps and had to be

> carried. I hope it's a minor flare-up and nothing

> that's festering for a major one with fever. We don't

> have a rheumy appt for another month, but will keep

> the daily chart on her until then. I don't like that

> the warmer bath water isn't good for the skin, because

> sometimes that's the only thing that helps her feel

> better in her joints. I'm grateful that if it's the

> JRA attacking her skin instead of her joints, I

> suppose. Thanks for all your advise and I'll keep you

> guys posted! Hugsssssssss!

>

> Tammy

>

> __________________________________________________

>