Living with JA

[Guest guest]

Living with JA,

Living with JA is hard to get use to at first. Once you have gotten over

the Stages of trying to get a Diagnoses, Finally a Diagnoses, The Guilty

feeling, What do we do now.

Being Diagnoses a Parent want's questions answered but there's always a

question left unanswered. Fustration hits us. Doctor after Doctor and still

nothing. The Diagnoses is made and guess what still there's questions but no

real answers. But there's a Diagnoses. Thought that before a Diagnoses was bad?

Try now when the Meds are not helping and it is going to be a while to find

the right Cocktail that will work. Finally a Cocktail works then after a few

months this stops working Fustration again. But you been on this road alittle

bit and you still want questions answered. You finally look other places like

finding another Parent who is dealing with the same issues. THIS is where

thing's fit in. We see eye to eye on issues of JA.

Now the guilty issues hit the parent. It's me who gave this Disease to my

child. Or was it something I ate while Pregnant with this child or was it

where I worked that caused this. Still questions go unanswered.

But you have met other Parents who are walking this road of JA and it's

issues. Finding that these Parent's are better educated than the Dr's.

lololol. WHY? Because they have been on that road longer and have walked in your

shoes before.

You begin to see life in a different way. Things you once thought was not

going well actually is not of a bugger concern than now. By understanding the

Diagnoses your learning about a different way of life. Life changes us by

what we See and learn.

Some wonder how will my child be in 10 yrs? What is going to happen in

the future? Will my child be able to live indepandently? This is where you ask

not the Dr so to say but the Parents who have kid's. with JA. We learn more

from experience and doing than anything. Always ask questions if you do not

get a answer then hunt for the answer yourself. :-). There's never a question

to small or to big. This is how we learn and become more knowledgable.

Now the Why? Why does my child have this JA? It can be Genetic or by

Envoromentaly. We do know that the body is at times a mystery.

Will JA go away like a Cold? No. It can go into a Remission but it is

never gone. You have a Medicated Remission, Non Medicated Remission. Either one

has it's draw backs. JA can come back. Either as a Child or as a Adult. It

can be Managed though with Diet, Exercise and Medication.

The Immune System is one which you understand some and JA is a Immune

Disease.

JA is a Disease which many do not understand. They are trying though and

with Researchers working everyday on it the Future does look brighter for our

kid's.

As a Parent of a JA Daughter I have learned and relearned about JA and

what Life really means. Enjoying the good Days and when a Bad day comes enjoy

it

to as there will be better days ahead.

Even though Life can bring road blocks we can always jump over them or go

through them or just sit and wait. I myself like going through them. I am not

the type to sit and wait.

Our kid's we have to hand it to them and then hug them so much as they are

the ones living with JA. We should look and listen to them. has

taught me so much about Life which I use to take for granted.

Stop and smell the roses and you will see life in a new light. :-). Not only

but most of these kid's on the list They are Troopers.

Being able to manage life in a way we never knew about. We should spot

light these kids. They are stronger than we think. Times may get them down but

they do not stay down long. When a good day comes they enjoy every minute of

it knowing they will have a bad day. They are living and enjoying that day.

I use to wish for a day where my angel could laugh instead of cry. One day

I heard that from my angel and I cried. Hearing the little thing's now seem

more important than before. Seeing my angel get out and walk and run and

enjoying life is a sight for me.

For any Parent here there are brighter days ahead. What seems to be a

obstacle doesn't seem as bad on those good days.

As far as the public well we have to Educate everyone about JA and related

issues. Speak Up, Speak Out, Speak Loudly. We can make a Difference. If our

child is having issues in School we advocate for them to make their voice

heard. We have not won the battle of a JA Cure yet but that day is coming. When

it does I will be out there Cheering it on. Cheering for those kid's who have

fought this battle and have won it.

Living with JA can be hard but once you understand it it gets better. Even

though obstacles lay ahead. Hope, Faith and Love will get us to a Cure one

Day.

Robbin

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