Newly Diagnosed, New to group

[Guest guest]

Hi ,

I too haven't told my family. I'm not sure they need to know. I will

think about it. I'm newly diagnosed as well. I am also not doing

treatment. I have an autoimmune disease called PBC where the immune

system attacks the bile ducts of the liver and the doc said HCV

treatment would worsen that disease plus there is only a 40-50% success

rate for genotype 1.

Anyway, welcome and good luck.

Ginger

[Guest guest]

Hi, guys. My name is . I was dx'ed with RA on Monday. I wonder if

anyone can give me suggestions about how to take care of myself and

fight fatigue. (I know that sounds whiny, but I really feel like

roadkill). Also, should I tell my kids now, or wait til I get my

regular meds for this? Does any one have any info or suggestions?

Any info at all is appreciated.

Thanks.

[Guest guest]

You didn't say how old your kids are, but in general, I believe in

telling kids the truth, with a level of detail and honesty that they

can handle. Mine are 7, 8, and 10, and I was diagnosed a year ago.

They know that I have arthritis, that it makes me tired and makes my

joints hurt, and that it won't kill me and it's not curable at this

time, but there are lots of good medicines out there to control it, we

just have to find the right one. They also know that I take my " crabby

pills " (methotrexate) on Friday night, and they'd better not wake me on

Saturday morning without a really good reason.

If you don't tell your kids, and they know that something is wrong,

whatever they imagine will probably be much worse than the truth --

they'll probably decide that you have cancer or something. RA sucks

(excuse my language), but it WON'T kill you and these days it probably

won't cripple you, although it definitely can make you feel like

roadkill at times!

--- In , " mtbargeman30 " <mtbargeman30@y...>

wrote:

>

> Hi, guys. My name is . I was dx'ed with RA on Monday. I wonder if

> anyone can give me suggestions about how to take care of myself and

> fight fatigue. (I know that sounds whiny, but I really feel like

> roadkill). Also, should I tell my kids now, or wait til I get my

> regular meds for this? Does any one have any info or suggestions?

>

> Any info at all is appreciated.

>

> Thanks.

>

[Guest guest]

Hi . I'm new with this site also. My daughter, has JRA. She's six now

- was DX when she was two. I have researched her disease since she was DX and

I've learned more from this group in the two weeks I've been posting than I did

when I researched it for the past four years. Very informative while at the same

time supportive and NEVER judgemental (which with this disease is very

important-a lot of prejudice with slow and dangerous scooter drivers lol and

prednisone side effects and all {my 2 year old gained nearly 25 lbs in 2 months

on Pred).

By the way the docs put poor Emmie on 20 mg of prednisone a day for a week

then taper to 15 mg the next week. She's been in a lot of pain - been flaring

for about 2 weeks now. I hope she doesn't gain too much weight. Being in first

grade, kids can be mean. She's very skinny now so she's got a little leway. Last

time she was on steroids she was on them for a year and a half. She was on 40

and 67.5 mg of pred a day then. Has osteoporosis still and even grew blonde

" fuzzies " on her face from it while the hair on her head and arms fell out from

the Methotrexate (horribly ironic hugh?). It was awful, I'm so scared of what

will happen this time. She's been sitting at the table with a cookie in front of

her as a bribe waiting and stalling to take her Prednisone now. She can't

swallow pills, so she has to take the liquid. It truly is horrid smelling. If I

put it in anything when she's done with the meds she will never touch that food

product again. She won't eat applesauce now or drink

applejuice or chocolate milk either. Can just never win as a sneaky mommy.

Well, mail ya later

hugs Missy

N2kids@... wrote:

In a message dated 1/5/2006 12:18:40 PM Central Standard Time,

mtbargeman30@... writes:

Hi, guys. My name is . I was dx'ed with RA on Monday. I wonder if

anyone can give me suggestions about how to take care of myself and

fight fatigue. (I know that sounds whiny, but I really feel like

roadkill). Also, should I tell my kids now, or wait til I get my

regular meds for this? Does any one have any info or suggestions?

Any info at all is appreciated.

Hi and Welcome! I'm I'm fairly new here too and this group has

been so helpfull! Please dont hesitate to vent, whine whatever youneed to

do, we understand. here is a link to the main site that was given to me:

_http://arthritissupport.info/_ (http://arthritissupport.info/)

there is tons of info and links on this site. Have you seen a Rheumatologist

yet? Have they given you any meds? Tell your children if you feel they need

to know. Hugs take care talk soon

[Guest guest]

Hi there. This is fairly new to me also. I take Plaquenil and have

found that it helped with the fatigue and stiffness tremendously! I

can't see where it's helped with " pain " but at least it's easier to

deal with when I'm not exhausted! I've found that plenty of rest and

gentle exercise helps.

Good Luck

--- In , " mtbargeman30 " <mtbargeman30@y...>

wrote:

>

> Hi, guys. My name is . I was dx'ed with RA on Monday. I wonder if

> anyone can give me suggestions about how to take care of myself and

> fight fatigue. (I know that sounds whiny, but I really feel like

> roadkill). Also, should I tell my kids now, or wait til I get my

> regular meds for this? Does any one have any info or suggestions?

>

> Any info at all is appreciated.

>

> Thanks.

>

[Guest guest]

Hi .

Welcome to the group. I am sorry that you have RA though, this

isn't the kind of club you dream of joining when you are little! I

am a newbie too though, and there are a lot of good people here and

a lot of good information.

You didn't say how old your kids were. I have a eleven year old and

a four year old, and I discuss my RA with them in different ways. I

think you will have to tell your kids something, because if you

don't then when you are fatigued and feeling weary they may think

that is their fault. Myself, I am not too much fun to live with

when I am flaring, so I remind the kids a lot that it is no fault of

theirs and I ask them to talk to me if they have questions and

concerns. It never ceases to amaze me the way children will

rationalize some things....

My four year old calls my RA, " the bendy ouchies " , and I will tell

her I can't pick her up because the bendy ouchies hurt pretty bad

today, etc.... I think for us, giving it a kind of silly name makes

it less scary.

My eleven year old son knows more, and he asks a lot of questions.

I think as with most topics you have to discuss with kids you should

answer their question the best way you can. My son has never really

known anything but a Mom that is " sick " and we have people tell us

all the time what a kind and compassionate child he is.

I think it is important to reach out to people and talk about your

feelings and emotions. I see a chronic pain counselor and that has

helped me a lot.

The good news is that there are a lot of medicines for you to try

out there, so do some research and start your attack on the RA!

There is a chance that you will be one of the lucky ones who has

success with a biological.

Above all try to remember it isn't your fault you got sick, and be

easy on yourself. The only cure for fatigue that I know of is rest,

so give yourself permission to get some. At least until the drugs

have a chance to start working.

Melisa

[Guest guest]

How do you get enough rest? My kids are 3 and almost 7. No rest for the wicked I

haven't been to a rheumy yet because I dont have ins, and visits are like $325.

Ouch!

If you have any suggestions, though Id appreciate them. And I agree about the

exercise. I do ROM before getting out of bed, I find it a little easier to move.

(not much, tho)

eandsspivey <ereese@...> wrote:

Hi there. This is fairly new to me also. I take Plaquenil and have

found that it helped with the fatigue and stiffness tremendously! I

can't see where it's helped with " pain " but at least it's easier to

deal with when I'm not exhausted! I've found that plenty of rest and

gentle exercise helps.

Good Luck

--- In , " mtbargeman30 " <mtbargeman30@y...>

wrote:

>

> Hi, guys. My name is . I was dx'ed with RA on Monday. I wonder if

> anyone can give me suggestions about how to take care of myself and

> fight fatigue. (I know that sounds whiny, but I really feel like

> roadkill). Also, should I tell my kids now, or wait til I get my

> regular meds for this? Does any one have any info or suggestions?

>

> Any info at all is appreciated.

>

> Thanks.

>

[Guest guest]

sorry about your diagnosis but you have come to a great group of people who can

answer your questions and give you great support....

As for telling your kids that will depend on their age, and undestanding only

you know your kids best as to whether they can handle the information

Good luck

mum of three

mtbargeman30 <mtbargeman30@...> wrote:

Hi, guys. My name is . I was dx'ed with RA on Monday. I wonder if

anyone can give me suggestions about how to take care of myself and

fight fatigue. (I know that sounds whiny, but I really feel like

roadkill). Also, should I tell my kids now, or wait til I get my

regular meds for this? Does any one have any info or suggestions?

Any info at all is appreciated.

Thanks.

[Guest guest]

Welcome, !

Sorry about your RA diagnosis.

Fatigue is a common and difficult problem in RA. For many, it will improve

with the treatment of your RA.

a linked to some good fatigue articles here:

http://arthritissupport.info/help.html

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Newly Diagnosed, New to group

> Hi, guys. My name is . I was dx'ed with RA on Monday. I wonder if

> anyone can give me suggestions about how to take care of myself and

> fight fatigue. (I know that sounds whiny, but I really feel like

> roadkill). Also, should I tell my kids now, or wait til I get my

> regular meds for this? Does any one have any info or suggestions?

>

> Any info at all is appreciated.

>

> Thanks.

[Guest guest]

,

Welcome to the group. I know that you will find some

helpful info here. There are some wonderful people

here. I hope you feel better soon.

Beth in AR

--- MELISSA CRIGLER <nmsanders@...> wrote:

> Hi . I'm new with this site also. My daughter,

> has JRA. She's six now - was DX when she was

> two. I have researched her disease since she was DX

> and I've learned more from this group in the two

> weeks I've been posting than I did when I researched

> it for the past four years. Very informative while

> at the same time supportive and NEVER judgemental

> (which with this disease is very important-a lot of

> prejudice with slow and dangerous scooter drivers

> lol and prednisone side effects and all {my 2 year

> old gained nearly 25 lbs in 2 months on Pred).

>

> By the way the docs put poor Emmie on 20 mg of

> prednisone a day for a week then taper to 15 mg the

> next week. She's been in a lot of pain - been

> flaring for about 2 weeks now. I hope she doesn't

> gain too much weight. Being in first grade, kids can

> be mean. She's very skinny now so she's got a little

> leway. Last time she was on steroids she was on them

> for a year and a half. She was on 40 and 67.5 mg of

> pred a day then. Has osteoporosis still and even

> grew blonde " fuzzies " on her face from it while the

> hair on her head and arms fell out from the

> Methotrexate (horribly ironic hugh?). It was awful,

> I'm so scared of what will happen this time. She's

> been sitting at the table with a cookie in front of

> her as a bribe waiting and stalling to take her

> Prednisone now. She can't swallow pills, so she has

> to take the liquid. It truly is horrid smelling. If

> I put it in anything when she's done with the meds

> she will never touch that food product again. She

> won't eat applesauce now or drink

> applejuice or chocolate milk either. Can just never

> win as a sneaky mommy.

> Well, mail ya later

> hugs Missy

> N2kids@... wrote:

>

>

>

> In a message dated 1/5/2006 12:18:40 PM Central

> Standard Time,

> mtbargeman30@... writes:

>

> Hi, guys. My name is . I was dx'ed with RA on

> Monday. I wonder if

> anyone can give me suggestions about how to take

> care of myself and

> fight fatigue. (I know that sounds whiny, but I

> really feel like

> roadkill). Also, should I tell my kids now, or wait

> til I get my

> regular meds for this? Does any one have any info or

> suggestions?

>

> Any info at all is appreciated.

>

>

>

> Hi and Welcome! I'm I'm fairly new

> here too and this group has

> been so helpfull! Please dont hesitate to vent,

> whine whatever youneed to

> do, we understand. here is a link to the main site

> that was given to me:

>

> _http://arthritissupport.info/_

> (http://arthritissupport.info/)

>

> there is tons of info and links on this site. Have

> you seen a Rheumatologist

> yet? Have they given you any meds? Tell your

> children if you feel they need

> to know. Hugs take care talk soon

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

>

[Guest guest]

I'm still trying to figure out that rest thing too. I have an 8 year old and a 1

year old. I nap when he naps and We watch Barney on the couch together. Not my

idea of good television, but it works. Luckily I have a wonderful fiance who

doesn't give me grief if I need to turn in at 7 or sleep in til 10 or both. I

hope you find something that works for you. take care of yourself.

kerri sue

Bargeman <mtbargeman30@...> wrote:

How do you get enough rest? My kids are 3 and almost 7. No rest for the wicked

I haven't been to a rheumy yet because I dont have ins, and visits are like

$325. Ouch!

If you have any suggestions, though Id appreciate them. And I agree about the

exercise. I do ROM before getting out of bed, I find it a little easier to move.

(not much, tho)

eandsspivey <ereese@...> wrote:

Hi there. This is fairly new to me also. I take Plaquenil and have

found that it helped with the fatigue and stiffness tremendously! I

can't see where it's helped with " pain " but at least it's easier to

deal with when I'm not exhausted! I've found that plenty of rest and

gentle exercise helps.

Good Luck

--- In , " mtbargeman30 " <mtbargeman30@y...>

wrote:

>

> Hi, guys. My name is . I was dx'ed with RA on Monday. I wonder if

> anyone can give me suggestions about how to take care of myself and

> fight fatigue. (I know that sounds whiny, but I really feel like

> roadkill). Also, should I tell my kids now, or wait til I get my

> regular meds for this? Does any one have any info or suggestions?

>

> Any info at all is appreciated.

>

> Thanks.

>