Anyone helping a child w/PA?

[Guest guest]

I hope this won't be a duplicate. I'm especially looking for people

who are caring for kids with this disease or who had it as a kid. I'm

waiting to find out if I have PA (orthopedist thinks I do & sent me to

a rheumy), and I have a teen who is using a wheelchair and crutches

because of this flare of PA. His mobility and pain have never been

this bad. He takes MTX, folic acid, Enbrel, Solu-Medrol infusions,

Indocin, Prevacid, Lyrica, Ultracet, and Lunesta. He has Vicodin and

Percocet to keep him out of the ER, but he's had 4 trips recently to

the ER, and they gave him IV's of Dilaudid. Insurance just took the

physical therapy away, so we're trying to find an aqua aerobics class.

I'd appreciate any coping advice and stories people have to share.

I've been trying to find a support group for kids, but the local one is

all senior citizens.

[Guest guest]

Gael...Maybe your email addy should be " superMom " rather than

PotterHarry! I thought I had MY hands full. I have a special needs

child with high functioning autism and OCD. bvgggggggggggggggggggggg

(and that was what the cat had to say about this). One thing I have

discovered since my developement of PA is that I can now relate to

in a different way. I used to tell her that she is not her

disease. That there is so much more to her than that. This is a repeat

but I'll share it again anyway. I tell her (and myself) that our lives

are like paintings. As babies, a drawing is rendered by our parents and

environment. Then as we grow old enough to make our own decisions, we

add the layers of colors and details as we chose. We get to decide if

it is a cheerful, inspirational painting or a dark forboding one. The

finished work is what people will remember us by. After my PA diagnosis

and issues came along, I had to " walk my talk " . Now I have to

demonstrate what I have always taught her. Not how I wanted it but we

have to make the best of the hand we are dealt. I so wish you and your

son did not have to go through all of this. It broke my heart to read

it. I'll be keeping you both in my prayers. -Betz

[Guest guest]

Thanks so much! That is a beautiful way to look at it, Betz, and

your hands ARE very full!

LOL about Super Mom. I didn't even mention my husband is deployed!

Everything is breaking or going wrong, of course. This weekend the

toilets stopped working, so we're making bathroom runs to Walmart,

CVS, the library, etc. Stuff keeps going wrong faster than I can

fix it. You don't want the list, believe me. LOL!

Back to the PA. I know my son is on everything they have to fight

this, and I'm wondering when it is going to really work. Did I

mention the insurance has denied him more physical therapy, so I'm

looking for aqua aerobics that is at a pool that can accomodate his

mobility issues? Money being such an unlimited resource in enlisted

military families, this is an exciting new development.

I don't want this illness to define him, me, or our family.

>

> Gael...Maybe your email addy should be " superMom " rather than

> PotterHarry! I thought I had MY hands full. I have a special needs

> child with high functioning autism and OCD.

bvgggggggggggggggggggggg

> (and that was what the cat had to say about this). One thing I

have

> discovered since my developement of PA is that I can now relate to

> in a different way. I used to tell her that she is not her

> disease. That there is so much more to her than that. This is a

repeat

> but I'll share it again anyway. I tell her (and myself) that our

lives

> are like paintings. As babies, a drawing is rendered by our

parents and

> environment. Then as we grow old enough to make our own decisions,

we

> add the layers of colors and details as we chose. We get to decide

if

> it is a cheerful, inspirational painting or a dark forboding one.

The

> finished work is what people will remember us by. After my PA

diagnosis

> and issues came along, I had to " walk my talk " . Now I have to

> demonstrate what I have always taught her. Not how I wanted it but

we

> have to make the best of the hand we are dealt. I so wish you and

your

> son did not have to go through all of this. It broke my heart to

read

> it. I'll be keeping you both in my prayers. -Betz

>

[Guest guest]

These illnesses will color us though...back to the painting thing.

As far as toilets...my daughter and I are convinced we have a toilet

curse. We always end up with toilets with issues. Once when

was a little thing, I heard her having a nightmare and I rushed in

to comfort her only to see her tossing her head back and forth, back

and forth yelling " Jiggle the handle! Jiggle the handle! " . The one

we have now is BRAND NEW this year and still we have to lift the

tank lid and flip a bar up after each use to stop it from running.

When do you think you can get yours fixed? That's not good. When we

had the big blackout here a few summers ago, I discovered that my

toilet only worked if the electricity was working...something to do

with the well system. You have no idea how close I came to using the

litter box. Hope it does not come to that for you....-Betz

> >

> > Gael...Maybe your email addy should be " superMom " rather than

> > PotterHarry! I thought I had MY hands full. I have a special

needs

> > child with high functioning autism and OCD.

> bvgggggggggggggggggggggg

> > (and that was what the cat had to say about this). One thing I

> have

> > discovered since my developement of PA is that I can now relate

to

> > in a different way. I used to tell her that she is not

her

> > disease. That there is so much more to her than that. This is a

> repeat

> > but I'll share it again anyway. I tell her (and myself) that our

> lives

> > are like paintings. As babies, a drawing is rendered by our

> parents and

> > environment. Then as we grow old enough to make our own

decisions,

> we

> > add the layers of colors and details as we chose. We get to

decide

> if

> > it is a cheerful, inspirational painting or a dark forboding

one.

> The

> > finished work is what people will remember us by. After my PA

> diagnosis

> > and issues came along, I had to " walk my talk " . Now I have to

> > demonstrate what I have always taught her. Not how I wanted it

but

> we

> > have to make the best of the hand we are dealt. I so wish you

and

> your

> > son did not have to go through all of this. It broke my heart to

> read

> > it. I'll be keeping you both in my prayers. -Betz

> >

>

[Guest guest]

I about fell off my chair laughing about " Jiggle the handle " , and my 12

yr. old, Connor, was howling with me. The litter box option totally

escaped me. ROFL! Our toilets have straightened up. It took a friend

who is a plumber (a mutual friend from church called him for me,

because I didn't want to disturb him on a weekend) coming over for them

to flush right. I swear that all he did was add a little water to the

tanks then push the lever. The shower curtain was whipping in the wind

created by the vortex of swirling water as the darned thing flushed

like it's never flushed - just for the satisfaction of making me look

like a fool, I am sure. I am glad it was an easy fix, but my weekend

of running to alternative restrooms was, excuse the pun, crappy.

Now I've learned I won't be able to flush the toilets when a hurricane

comes to knock out our power. You lived here, though, so you know JAX

leads a charmed existence.

I heard her having a nightmare and I rushed in

> to comfort her only to see her tossing her head back and forth, back

> and forth yelling " Jiggle the handle! Jiggle the handle! " . ... You

have no idea how close I came to using the

> litter box. Hope it does not come to that for you....-Betz

>

[Guest guest]

Hi Gael,

I haven't been on the boards in sometime (returned to teaching and have

been swamped at work), so let me introduce myself. My name is Jenn and

I live in Arkansas. When I saw your post, I seemed to remember there

being a young lady with juvenile psoriatic arthritis who writes for

butyoudontlooksick.com. I looked it up and she hasn't posted an article

in a bit, but her name is beth. She writes her articles from the

viewpoint of a teen with a chronic illness. It might be worth looking

at. I thought her article related to school issues was quite well

written.

Take care,

Jenn in Arkansas

[Guest guest]

Hey Jenn!!! Good to see you! I know that school has you busy. Hope that

is going well for you. I'm sure it is for the kids in your class. You

must be a hoot in the classroom. I think of you from time to time. Just

know that. Love, Betz

[Guest guest]

Jenn,

Thanks. I took a look at the site and read through some of the message

boards before e-mailing a link to my son.

Gael