Re: Re: Fw: brief intro please/to:

[Guest guest]

Hi my name is Missy, and I'm 33. My daughter, is six and has systemic JRA.

She's had it since she was 2. I'm married to Neal and have another eight year

old daughter named . is having another flare right now and is back on

Prednisone. She's been on Remicade and MTX inj. for four years --and on

Prednisone off and on. She was on it for a year and a half in the beginning. She

nearly doubled her weight from 29 to 52 lbs. This time so far she's gained about

six pounds. But, now that she's six she can feel the people stare and knows that

her favorite pants won't button. I think it depresses her. She's so hungry but

doesn't want to eat too much for fear of the weight gain. I try to give her only

healthy snacks, but she's a kid and it's hard. She's again got that little

white " fur " on her face from the steroids. Thank God she's very blonde. I wish

it was me and not her. I hear all of the nice people here and how it's such a

life long battle and it scares the hell out of me

for what her future holds. She's very sweet and takes everything in stride

because she can't remember ever not having it. (cause she was 2 when dx). The

docs said she'll have this all her life since she's been flaring basically for

four straight years with a little break in between. She's sick all the time

because of being immune suppressed. But, even though it's a hard situation I

know that all we can do is our best to help each other out. I hope you " ALL "

feel better soon. This group is so nice- and I've never seen a group of

strangers being so nice and supportive to one another. I laugh when I see Stills

Support in my e-mail and notice all the RE: complaining, RE: sick and tired, RE:

hate these docs. I think it's cool people feel free to complain in this group

and know that noone judges them. Keep your heads up and know that I am always

thinking of all of you.

Hugs,

Missy

's Mom

<sburgher@...> wrote:

Hi Noreen,Its true we do care for eachother,its a kind of elite club!

Our pets do more for us than we think,as we have to look after them

and in doing this i think they keep us going.I am so glad i have my

little yorkie Candy.Its great to hear from you! Hugs

wrote:

>

> Hi,

> I'm Noreen. I mostly just lurk here, but I do read everything

everyday. I'm

> 51, from Northern Minnesota, have been married almost 28 years and

have 2

> grown children. I also have 2 collies and a fat cat.

> I've been Dx with RA for about 4 years now, and am pretty well

under control

> with MTX (except for an occasional flare).

> It's amazing to me that no matter where in the world people are

from, RA

> kind of pulls us all together.

>

> Noreen

>

> [ ] Fw: brief intro please??

>

>

> >

> > I wonder would it be too much to ask for us all to do a brief

intro about

> > ourselves??? I have only been with this group for a few months

and in

> > between moving and being offline with computer probs..I keep

losing track

> > of who's who......

> >

> > in Australia

> > 34years old, married with three boys.

> > RA (3yrs diagnosed, 8yrs symptoms), Raynards and more recently

> > Fibromyalgia.

> >

> >

[Guest guest]

Hi Missy,

Missy, I know that something with our kids is more important than if it were us.

In 1969 my daughter was diagnosed with diabetes. I didn't know anything about

diabetes, and worse yet I learned the doctors didn't and even now most don't.

When the doctors think they know something that don't can cause big problems.

She was hospitalized and as soon as I got home I pulled out my medical

encyclopedia which was a few years old. It as much said it was fatal in

children. That information was totally wrong, but I'm sure you can imagine how

much it upset me. Since then to this day I consider the source of any

information before I go any further.

At least the diagnosing doctor was one, one of the very few, doctors that we

have met that was knowledgeable enough to be worthwhile. I feel sure that during

that time I suffered far more than my daughter did. That could be the way it is

with you and . No doubt she will suffer more later but for now it most

likely hurts you more.

I am Betty and I recently joined this group and do not yet have a grasp of who

is who. I am 72 and my diabetic daughter is 46 and doing very well. She lives at

the southern tip of FL which makes it quiet away from us. She is a boat captain,

in spite of the Coast Guard giving her a hard time once when applying for the

needed licensee. She really sticks up for anyone who is discriminated against

because of a disease and not because of the health. She has not let diabetes

hold her back at all, and never used it as an excuse for anything.

I have a son who is 48. My son, my husband and I own/operate a TV repair shop

<pensacolatvrepair.com>. Pensacola is in extreme north west FL so that it is

almost AL. Sometimes it seems the state of FL doesn't even recognize us as part

of the state. I am wondering when can we retire.

The rheumatologist that I have seen twice disregards lab reports and complaints.

There is nothing wrong with me!!

I probably will never go back to her again. I was referred to her (not

specifically her, but a rheumatologist) by my pulmonary doctor when all the labs

except for the RA factor indicate auto immune and points pretty sure to lupus or

scleroderma. If I don't have Raynauds I have something just like it. I had a

repeat cat scan done to check the multiple nodules that are in both lungs. They

are about the same as 3 months ago. At that time they did a lung biopsy and it

came back negative for the things that were tested, bacteria, fungus, cancer,

and some others. I am hoping that we can just do another scan in 6 months as the

radiologist suggested. After I see the pulmonary doctor and hear what he has to

say I will decide about another rheumatologist. I see him Thurs, day after

tomorrow and I am anxious to get his take on this. He has told me that if they

are still there at this scan I just had that he will probably want to do more

testing. He said the lung biopsy was the " least invasive " .

Bvan (Betty)

[ ] Fw: brief intro please??

>

>

> >

> > I wonder would it be too much to ask for us all to do a brief

intro about

> > ourselves??? I have only been with this group for a few months

and in

> > between moving and being offline with computer probs..I keep

losing track

> > of who's who......

> >

> > in Australia

> > 34years old, married with three boys.

> > RA (3yrs diagnosed, 8yrs symptoms), Raynards and more recently

> > Fibromyalgia.

> >

> >