Re: OT: the questionairre

[Guest guest]

I am afraid this disease will leave me wheelchair bound and unable to do

anything for myself. (I am 36 and had it since I was 3 and have struggles daily

with this.

love, prayers and blessings,

[Guest guest]

Also, I fear my 5 yr old daughter having to grow up too fast because of Mommy

having RA - I mean she already sorts laundry better than some adults LOL.

I dont want Destiny to miss anything in life because I have this disease.

love, prayers and blessings,

(poly)

[Guest guest]

Donna I'm with you! That too is my biggest worry. I too am a single parent and I

feel the same way.

hugs; paulette

ajaoky@... wrote:

on the recent get to know there was a question about what you are most

afraid of...several answered this in regards to their kids, JRA, etc and made me

think that this would be yet another a good advocacy idea. We are all friends

together in this and do not hesitate to share

your answer because I can assure someone else feels the exact same way. SO..

What about your child or yourself having JRA truly scares you?

I will start by saying for me, my biggest fear is losing my battle to this

disease and leaving my boys without their " momma " . I have raised them since

birth and done everything for them as a single parent so leaving them would be

the worst thing for me and them.

Thanks to all who will take the time to answer this and let me use the

answer in future advocacy ventures.

Donna

[Guest guest]

Goodness, I have a few of those especialy after the deaths of some AJAO

buddies, Saal and Tod Mullins.... while I know it's rare, there are

so many multiple risks with the disease, medications, etc and because I have

kidney, heart and lung involvement, I worry about the disease taking my life

somehow and never fufiling my dreams. Another fear I have is that the

diseases will continue to progress along with the pain and again take away

my dreams as being in college is an extreme challenge now and I know the

doctoral program is going to be harder along with the pain and disease that

is hard for other people to understand. I fear most not making it in the

life that I want because of the disease....

On 2/18/06, thewalkers1989@... <thewalkers1989@...>

wrote:

>

> I am afraid this disease will leave me wheelchair bound and unable to do

> anything for myself. (I am 36 and had it since I was 3 and have struggles

> daily

> with this.

>

> love, prayers and blessings,

>

>

>

>

>

[Guest guest]

My biggest fear for my son is that he will endure a life time of pain never

knowing what it like to be a normal healthy kid. And that the meds he takes or

will take will cause other problems for him in the future.

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

-------------- Original message --------------

From: ajaoky@...

on the recent get to know there was a question about what you are most

afraid of...several answered this in regards to their kids, JRA, etc and made me

think that this would be yet another a good advocacy idea. We are all friends

together in this and do not hesitate to share

your answer because I can assure someone else feels the exact same way. SO..

What about your child or yourself having JRA truly scares you?

I will start by saying for me, my biggest fear is losing my battle to this

disease and leaving my boys without their " momma " . I have raised them since

birth and done everything for them as a single parent so leaving them would be

the worst thing for me and them.

Thanks to all who will take the time to answer this and let me use the

answer in future advocacy ventures.

Donna

[Guest guest]

I'm afraid of not being able to accomplish the things I want to accomplish and

never getting to be able to feel healthy again.. I want to be healthy..

thewalkers1989@... wrote: I am afraid this disease will leave me

wheelchair bound and unable to do

anything for myself. (I am 36 and had it since I was 3 and have struggles daily

with this.

love, prayers and blessings,

[Guest guest]

big hugs Val and soft hugs for the lil man!

hang tight and hang tough~

Donna

[Guest guest]

Hi Donna,

In the questionairre I answered that question by saying that my biggest fear was

having Robbie not be able to achieve his dreams due to this disease (not exactly

sure how I worded it, but that was the gist of it) - but I wasn't entirely

honest with that response. My biggest fear is of course losing my beautiful

little boy to this disease. There have been times that he has been so

desperately ill that it was a possibility - and even during the best of times I

can wake up in terror in the middle of the night, thinking that my baby is that

ill again. It isn't just the JRA - but the fear that some child will show up at

school with chicken pox, and that I will lose my baby to that disease, due to

the immune suppression. Most of the time I push that away - knowing how closely

we watch our kids. and the monitoring the docs do - so I don't allow us (or me)

to live in fear of what may happen - most of the time I feel pretty secure that

we have a handle on everything -but at the same time, in years that I have been

a member of this list, I have heard the sad news of the beautiful children that

we have lost - and I knowthose parents, and physicians were ever watchful as

well. Again - most of the time I have faith that there are big things ahead for

my little boy - and that all will be well - but we have had a rough weekend and

that brings me down.

He missed out on his cub scouts banquet Saturday, because he was too ill to go.

Went to sleep early Friday (I knew that was a bad sign - though no fever, jolint

pain, rash etc) - and then he slept in on Saturday (again not a good sign - he

is usually up calling me to get up & if he is still asleep when I get up he's

generally up the minute he hears me go downstairs) - Anyway - when he did get

up late on Saturday it was nearly noon & I heard him vomitting in the bathroom.

I flew up the stairs and the next few hours were spent going back to the

bathroom for him to be sick. The stomach pain hit a few hours later, but no

fever or rash - no joint pain - and the stomach pain would go away again after

he vomitted. Late saturday I packed our " hospital bag " just in case, and did

some extra laundry - to be prepared. The vomitting finally stopped in the

evening & he was taking sips of fluid and keeping it down - the fever started in

the middle of the night & got up to 103.4 - not flare high levels - but the

joint pain was starting (no meds all day didn't help) - he was able to keep

Motrin down and I chanced the pred early Sunday am - and it stayed down too. I

would have probably headed to the hospital - but the fever stayed down - not

gone, but down - and didn't spike up as high when the Motrin ran out, so I sat

up and watched for the flare to come. He slept most of the day Sunday - the

stomach pain would come and go - he was able to eat late in the day and the

fever was completely gone by 2 pm. Today, he slept a little late, but has had

two meals without difficulty, had all his meds, no stomach pain & no joint pain.

This is the second weekend in less than a month that he has had a stomach

bug/virus/flu - whatever it was. I am thinking if there is another one anytime

soon, I will head to the hospital because the third time is the charm.

Val

Rob's Mom (8,systemic)

OT: the questionairre

on the recent get to know there was a question about what you are most

afraid of...several answered this in regards to their kids, JRA, etc and made me

think that this would be yet another a good advocacy idea. We are all friends

together in this and do not hesitate to share

your answer because I can assure someone else feels the exact same way. SO..

What about your child or yourself having JRA truly scares you?

I will start by saying for me, my biggest fear is losing my battle to this

disease and leaving my boys without their " momma " . I have raised them since

birth and done everything for them as a single parent so leaving them would be

the worst thing for me and them.

Thanks to all who will take the time to answer this and let me use the

answer in future advocacy ventures.

Donna

[Guest guest]

Val - You are amazing!! I hope that Rob makes it through the next couple

of weeks without any more incidents. That must have been so scary... I

hope that third time is NOT the charm in this case. What a bummer that

he had to miss the banquet. I am sure he was disappointed.

I can completely relate to the constant worrying or the waking in the

middle of the night. Lately I have had some bad insomnia. I think it is

because of the constant worry I have for Miss Caroline. Like many of us

here, I don't quite see the end of the rainbow right now. We have been

spiraling downhill for about the past year and I think we have just

finally reached the bottom. I hate to live in constant fear, but

sometimes I just can't get away from it. Okay - I am rambling now...

Alia and Caroline, age 4, poly and iritis

________________________________

From: [mailto: ] On

Behalf Of carneyval@...

Sent: Monday, February 20, 2006 7:22 PM

Subject: Re: OT: the questionairre

Hi Donna,

In the questionairre I answered that question by saying that my biggest

fear was having Robbie not be able to achieve his dreams due to this

disease (not exactly sure how I worded it, but that was the gist of it)

- but I wasn't entirely honest with that response. My biggest fear is

of course losing my beautiful little boy to this disease. There have

been times that he has been so desperately ill that it was a possibility

- and even during the best of times I can wake up in terror in the

middle of the night, thinking that my baby is that ill again. It isn't

just the JRA - but the fear that some child will show up at school with

chicken pox, and that I will lose my baby to that disease, due to the

immune suppression. Most of the time I push that away - knowing how

closely we watch our kids. and the monitoring the docs do - so I don't

allow us (or me) to live in fear of what may happen - most of the time I

feel pretty secure that we have a handle on ever! ything -but at the

same time, in years that I have been a member of this list, I have heard

the sad news of the beautiful children that we have lost - and I

knowthose parents, and physicians were ever watchful as well. Again -

most of the time I have faith that there are big things ahead for my

little boy - and that all will be well - but we have had a rough weekend

and that brings me down.

He missed out on his cub scouts banquet Saturday, because he was too ill

to go. Went to sleep early Friday (I knew that was a bad sign - though

no fever, jolint pain, rash etc) - and then he slept in on Saturday

(again not a good sign - he is usually up calling me to get up & if he

is still asleep when I get up he's generally up the minute he hears me

go downstairs) - Anyway - when he did get up late on Saturday it was

nearly noon & I heard him vomitting in the bathroom. I flew up the

stairs and the next few hours were spent going back to the bathroom for

him to be sick. The stomach pain hit a few hours later, but no fever or

rash - no joint pain - and the stomach pain would go away again after he

vomitted. Late saturday I packed our " hospital bag " just in case, and

did some extra laundry - to be prepared. The vomitting finally stopped

in the evening & he was taking sips of fluid and keeping it down - the

fever starte! d in the middle of the night & got up to 103.4 - not flare

high levels - but the joint pain was starting (no meds all day didn't

help) - he was able to keep Motrin down and I chanced the pred early

Sunday am - and it stayed down too. I would have probably headed to the

hospital - but the fever stayed down - not gone, but down - and didn't

spike up as high when the Motrin ran out, so I sat up and watched for

the flare to come. He slept most of the day Sunday - the stomach pain

would come and go - he was able to eat late in the day and the fever was

completely gone by 2 pm. Today, he slept a little late, but has had two

meals without difficulty, had all his meds, no stomach pain & no joint

pain. This is the second weekend in less than a month that he has had

a stomach bug/virus/flu - whatever it was. I am thinking if there is

another one anytime soon, I will head to the hospital because the third

time is the charm.

Val

Rob's Mom (8,systemic)

OT: the questionairre

on the recent get to know there was a question about what you are most

afraid of...several answered this in regards to their kids, JRA, etc and

made me

think that this would be yet another a good advocacy idea. We are all

friends

together in this and do not hesitate to share

your answer because I can assure someone else feels the exact same way.

SO..

What about your child or yourself having JRA truly scares you?

I will start by saying for me, my biggest fear is losing my battle to

this

disease and leaving my boys without their " momma " . I have raised them

since

birth and done everything for them as a single parent so leaving them

would be

the worst thing for me and them.

Thanks to all who will take the time to answer this and let me use the

answer in future advocacy ventures.

Donna

[Guest guest]

What I am most afraid of is that the spondy will affect Chris' spine and

it would fuse. Especially if it could all be prevented by better

adherence to his meds now, and he does not do what he should to keep

himself doing well. I worry that he will have bigger problems in the

future with his spondylitis. Michele ( 18, spondy)

OT: the questionairre

on the recent get to know there was a question about what you are most

afraid of...several answered this in regards to their kids, JRA, etc and

made me

think that this would be yet another a good advocacy idea. We are all

friends

together in this and do not hesitate to share

your answer because I can assure someone else feels the exact same way.

SO..

What about your child or yourself having JRA truly scares you?

I will start by saying for me, my biggest fear is losing my battle to

this

disease and leaving my boys without their " momma " . I have raised them

since

birth and done everything for them as a single parent so leaving them

would be

the worst thing for me and them.

Thanks to all who will take the time to answer this and let me use the

answer in future advocacy ventures.

Donna