Re: I HATE this disease.It's not JUST Jra.

February 11, 2004

HI.

My name is and I am mum to Jackie 7 1/2 with poly system. I have not written in a while but read everything.

This is not JUST JRA. Sometimes I wish my dayghter rather had cancer because then there would be a treatment that either would cury her for life or she wouldn't make it.

What I feel some of us are going through is a nightmare. Jackie has been sick for over 4 years and in her case it's a matter of life or death. One month ago we were at Shriners and the results was very depressing to see.

Jackie has not had a flare for over 3 years and for the last year she has not had very much pain so most of the time she doesn't even want Ibuprofen which is the only drug she has been on for the last 3 years. We choose to treat her alternativly with different approaches and since she has just gotten stronger and stronger and does more things we thought she was doing fine. But the x-rays showed more joint damage in all joints in her whole body. They think her upper neck is fusing. Her bones were thinner now than 3 years ago and very low on mass. They were like chickenbones they told us. She will need jointsreplacements in alot of joints but the way things look there is nothing to attach a jointreplacement to because her bones are like soft cheese. The doctors told us that without MTX and Embrel her cartlidge will soon be all gone and then the bones will be eaten by the Jra and she wount have any support in her arms and legs, end up in a wheelchair and even maybe need a tube to help her breath. She will not live a long life and the situation will become lifetreatening unless we put her on the drugs the doctors told us.

What do we do? No matter what we do out impression is that she will never live to be 40-50 years old. It makes me so sad to get this prognosis. I hate the severity of the desease that we never have been told upfront before. I have not had the energy to writhe about this before and just wants to hide in bed and wake up and have Jackie running around like she just to before she got sick. I feel I can't take dealing with how this effects her whole body and what I am doing is never enough because I can never do enough to help her. There is always joints that are contracted and things to work on. If you do alternative more holistic treatments you might save inner organs better than the different drugtretments but what good does that do to her if her joints and body is collapsing.

Can someone out there, maybe a veteran , give me a short version of how they handled their Jra when there were no drugs out there and if they had the sustemic and all joints affected. Give me some hope that you can have a life and that you can live long. What are the reasons for Jra patients to die earlier that the rest of the population ? Is it the sideeffects of the drugs or just the way the desease effects the body ?

Jackie is fine and healthy and unaware of what I am think and the severety of her Jra. I want her to not know for as long as possible. But if I start Embrel I know she is going to ask why we need to do that when she feels ok and I don't know if I should say it's just to help her even more or because the Jra is so sevear so we need it. Have any of you other mums or dads told the reasons for why they go on Embrel ?

Thanks for reading all this and one more thanks if you have the energy to writhe back. The best to all

mum to Jackie 7 poly system

>From: Arthurnator@... >Reply- > >Subject: Re: I HATE this disease. >Date: Tue, 10 Feb 2004 23:22:00 EST > >In a message dated 2/10/04 4:13:09 PM Central Standard Time, >sonia1md@... writes: > > > > > > > > I get frustrated with myself for not being stronger. I was looking at a web > > page today for friends of mine that are at St. Judes because their 9 month > > old has cancer and yet they are so up-beat. I think whats wrong with > > me. I should be happy that this is just jra. > > > > Plan your next US getaway to one of the super destinations here.

February 11, 2004

Hi ,

Oh, ... my heart hurt when I read your message. You are

absolutely correct in saying that this is not JUST arthritis. When

was finally well enough to leave the hospital during his first

flare at the onset and we needed to fly from Maui over to Honolulu to

meet with Doctor Dave at Kapiolani, I felt so relieved at first, when he

told us it was JRA. Arthritis sounded very comforting, in fact,

considering all the other thoughts and possibilities that had passed

through my mind while worrying about what was going on and why my child

was suddenly so sick. The image in my mind when I heard the word

arthritis used to be that of a middle-aged or elderly person who had

osteoarthritis, or what I used to consider just some normal and

inevitable wear and tear in a couple joints, after having lived a very

long and active life.

It took a few minutes before the apparent contradiction registered for

me. Then I asked, if it's just arthritis then how come he's had such

extreme pain and all the high fevers? Why the enlarged spleen and lymph

nodes? The sudden weight loss? Why the rash? How could it possibly be

arthritis when his symptoms were so severe and while he's still so

young? I had no idea how serious juvenile arthritis could be. I had so

much to learn.

Our children are very strong and very adaptive. They learn new ways to

do things, avoiding the use of a particularly sore joint, and just try

to get on with living. They get used to pain, even, when it becomes

something that they live with everyday. It becomes the norm for them and

their tolerance can get very high. That's something that I really didn't

understand well until after I had listened to the stories shared by

adults who grew up living with Stills and JRA.

In my son's case, we've always talked very openly about his JRA. Being a

single Mom, I sometimes think that my children and I tend to have a

somewhat more open communication policy compared to when there are two

adults in the household who talk to one another first, about what to

share and what not to share in discussion with the kids. I felt that

rather than trying to protect him, emotionally, by not letting him know

what could possibly happen over time that, instead, it was important for

him to know what I knew, in age-appropriate terms that he could

understand and relate to. Sometimes, I think, children's imaginations

can create scenarios even worse than the real truth, when they are

thinking a lot about something that is obviously an issue but which is

not openly spoken of. Some parents of young children, though, tend not

to share as much as I did. It's an individual choice and I'm sure there

are positive sides to both ways.

The same is true, I'd guess, about treating arthritis with a holistic

approach, versus a Western-medicine-based approach. Both sides have

benefits and drawbacks. Maybe it depends most on the severity of one's

symptoms? Or one's hoped for outcome? Do you want a very long life, if

and when every day is physically painful and very challenging or would

you prefer spending a shorter time here on the planet but a more

comfortable time? Quality of life was a very important consideration for

me, in making decisions about 's treatment.

Many years ago the doctor approached us about using a particular

medicine mainly, I think, because he wanted Josh to be off the high dose

steroids as desperately as I did and yet his disease course was

non-relenting each time we tried to decrease. One of the side effects

was the chance that Josh might have fertility problems after using it

for a while. I was not ready at that stage to possibly interfere with

such an important aspect of his adult life, the ability to have children

later on if he chose to, when the possible consequences were not

something that he could comprehend yet at such a young age. I refused

that medicine and we went a different route. There are almost always

options available. More now than ever before, when it comes to treating

arthritis.

I think, in parenting in general, that many of us worry about not being

able to do enough. We want for our children to be able to have a better

life than what we had, to improve on our own experience. When our child

has a chronic health problem, this is complicated even more. It makes us

examine in great depth our beliefs and our hopes and we are forced to

make far-reaching and often times very difficult decisions.

I know how hard it is sometimes, especially when we are faced with

trying to come to terms with new information such as what you learned at

Jackie's latest doctor appointment. Don't despair. Talk things over with

your husband. Talk with Jackie. Talk with our other list members. You

are not alone with this. We understand your feelings, even if we each

take a slightly different approach to working through things. I hope

that you will find a sense of hope and optimism, despite this news of

the arthritis progression.

Take Care,

Georgina

Gentile wrote:

> HI.

>

> My name is and I am mum to Jackie 7 1/2 with poly system. I

> have not written in a while but read everything.

>

> This is not JUST JRA. Sometimes I wish my dayghter rather had cancer

> because then there would be a treatment that either would cury her for

> life or she wouldn't make it.

>

> What I feel some of us are going through is a nightmare. Jackie has been

> sick for over 4 years and in her case it's a matter of life or death.

> One month ago we were at Shriners and the results was very depressing to

> see.

>

> Jackie has not had a flare for over 3 years and for the last year she

> has not had very much pain so most of the time she doesn't even want

> Ibuprofen which is the only drug she has been on for the last 3 years.

> We choose to treat her alternativly with different approaches and since

> she has just gotten stronger and stronger and does more things we

> thought she was doing fine. But the x-rays showed

> more joint damage in all joints in her whole body. They think her upper

> neck is fusing. Her bones were thinner now than 3 years ago and very low

> on mass. They were like chickenbones they told us. She will need

> jointsreplacements in alot of joints but the way things look there is

> nothing to attach a jointreplacement to because her bones are like soft

> cheese. The doctors told us that without MTX and

> Embrel her cartlidge will soon be all gone and then the bones will be

> eaten by the Jra and she wount have any support in her arms and legs,

> end up in a wheelchair and even maybe need a tube to help her breath.

> She will not live a long life and the situation will become

> lifetreatening unless we put her on the drugs the doctors told us.

>

> What do we do? No matter what we do out impression is that she will

> never live to be 40-50 years old. It makes me so sad to get this

> prognosis. I hate the severity of the desease that we never have been

> told upfront before. I have not had the energy to writhe about this

> before and just wants to hide in bed and wake up and have Jackie running

> around like she just to before she got sick. I feel I can't take dealing

> with how this effects her whole body and what I am doing is never enough

> because I can never do enough to help her. There is always joints that

> are contracted and things to work on. If you do alternative more

> holistic treatments you might save inner organs better than the

> different drugtretments but what good does that do to her if her joints

> and body is collapsing.

>

> Can someone out there, maybe a veteran , give me a short version of how

> they handled their Jra when there were no drugs out there and if they

> had the sustemic and all joints affected. Give me some hope that you can

> have a life and that you can live long. What are the reasons for Jra

> patients to die earlier that the rest of the population ? Is it the

> sideeffects of the drugs or just the way the desease effects the body ?

>

> Jackie is fine and healthy and unaware of what I am think and the

> severety of her Jra. I want her to not know for as long as possible. But

> if I start Embrel I know she is going to ask why we need to do that when

> she feels ok and I don't know if I should say it's just to help her even

> more or because the Jra is so sevear so we need it. Have any of you

> other mums or dads told the reasons for why they go on Embrel ?

>

> Thanks for reading all this and one more thanks if you have the energy

> to writhe back. The best to all

>

> mum to Jackie 7 poly system

February 12, 2004

Hi ,

Thank you. That means a lot to me. The way I see it, we're all in this

together. We all share a common bond. Everyone's input is important

because we each have a unique perspective, based on our own individual

experiences. Through sharing our opinions and talking about what worked

and didn't work for us, as well as being informed about the ongoing

research relating to this disease and it's treatments, we hopefully will

have a somewhat easier time understanding, and adapting to living with,

JRA. It's nice to know that you are not alone and that other people have

traveled down the same path before you. Nicer, still, when they help to

create a road map, of sorts, to warn about some of the bumps and curves

along the path ... to help make the next traveler's journey a little bit

less daunting.

Take Care,

Georgina

sonia dykhuizen wrote:

> Georgina,

>

> You are a true veteran of this disease and your words of wisdom indicate

> that. Thanks for everything you do, for all of us and for your

> willingness to

> share, encourage and teach.

>

> I appreciate you.

>

> (mom to aundrea age 8 systemic jra)

February 13, 2004

,

Im am sorry to read of Jackies worsening situation. it must be heart wrenching to know what to do. Will you start the drugs???

I think they have come out with some amazing new treatments over the past few years and feel that it will only get better as they understand more about this disease. Who knows that the future holds, but i have to remain hopeful that perhaps a cure all drug will be available one day.

I wish you and jackie well. Please let us know how she is doing..

hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: " Gentile" >Reply- > >Subject: Re: I HATE this disease.It's not JUST Jra. >Date: Wed, 11 Feb 2004 19:20:17 -1000 > Keep up with high-tech trends here at "Hook'd on Technology."