Re: Newly diagnosed and have questions

[Guest guest]

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

wrote:

> My doctor and I are pretty sure it is RA and I think I've finally

> accepted that. I did not want to believe it at first because of my

> age--I'm only 24 and newly married. Is there anyone out there close

> to my age who has or is experiencing this?? I would really like to

> chat about how you're life has changed. Thanks a bunch.

>

Mu co-worker has a friend your age with R.A. She just gave birth to a

healthy baby girl!

Sierra

[Guest guest]

> My doctor and I are pretty sure it is RA and I think I've finally

> accepted that. I did not want to believe it at first because of my

> age--I'm only 24 and newly married. Is there anyone out there close

> to my age who has or is experiencing this?? I would really like to

> chat about how you're life has changed. Thanks a bunch.

>

Mu co-worker has a friend your age with R.A. She just gave birth to a

healthy baby girl!

Sierra

[Guest guest]

,

Sorry for my late response. I'm very behind on mail. I was around

your age when I was diagnosed. Young children can get RA. It's

called juvinile rheumatoid arthritis (JRA).

I feel so bad for the children. It's hard enough for an adult to deal with RA.

My life has changed in so many ways I wouldn't know where to begin.

I'm now 50, so I've dealt with a lot in all these years. There has

been some positive things about having RA, mainly I was able to stay

home with my kids. The negative was loosing my career and a lot of

the physical activities that I once enjoyed. I've learned to adapt to

what ever life dealt me. Treatment options are much different today

than when I was diagnosed, so hopefully your disease will be well

controlled. RA is a difficult disease to diagnose, so hopefully you

won't have it.

a

On Sat, 19 Feb 2005 23:37:34 -0000, dianaenxing <dianaenxing@...> wrote:

>

>

> My doctor and I are pretty sure it is RA and I think I've finally

> accepted that. I did not want to believe it at first because of my

> age--I'm only 24 and newly married. Is there anyone out there close

> to my age who has or is experiencing this?? I would really like to

> chat about how you're life has changed. Thanks a bunch.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

,

Sorry for my late response. I'm very behind on mail. I was around

your age when I was diagnosed. Young children can get RA. It's

called juvinile rheumatoid arthritis (JRA).

I feel so bad for the children. It's hard enough for an adult to deal with RA.

My life has changed in so many ways I wouldn't know where to begin.

I'm now 50, so I've dealt with a lot in all these years. There has

been some positive things about having RA, mainly I was able to stay

home with my kids. The negative was loosing my career and a lot of

the physical activities that I once enjoyed. I've learned to adapt to

what ever life dealt me. Treatment options are much different today

than when I was diagnosed, so hopefully your disease will be well

controlled. RA is a difficult disease to diagnose, so hopefully you

won't have it.

a

On Sat, 19 Feb 2005 23:37:34 -0000, dianaenxing <dianaenxing@...> wrote:

>

>

> My doctor and I are pretty sure it is RA and I think I've finally

> accepted that. I did not want to believe it at first because of my

> age--I'm only 24 and newly married. Is there anyone out there close

> to my age who has or is experiencing this?? I would really like to

> chat about how you're life has changed. Thanks a bunch.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

-,

I can relate to what you wrote , I am 30 and was diagnosed last

year. I have a 19 month old baby and have been married for 4 years. I

myself could not believe that I have RA. I don't even know anyone who

has it. I kept making my doctor test me over and over just to be sure.

The good news is we caught it in the very beging stages so I have no

erosion or damage. Now they have me on methotratiate, enbrel and

celebrex. For awhile I was depressed because my life had changed so

much in such a short time.The pain never seemed to go away and I was

so tired. I felt so old so fast. I am young but have more in common

with older people because we compair meds. crazy!!!! But now I can

honestly say I am more positive about my future because the meds that

I am on have seen to be working. I don't hurt as bad and I have energy

to live my life almost the same as before. Just have to take better

care of me. I think the most frusterating part of all of this is

getting the meds right. Its a shot and miss game, but I can say for me

they finally hit the mark. Just try to stay positive and live in the

moment. Take care and write back.

-- In , a <papola@g...> wrote:

> ,

> Sorry for my late response. I'm very behind on mail. I was around

> your age when I was diagnosed. Young children can get RA. It's

> called juvinile rheumatoid arthritis (JRA).

> I feel so bad for the children. It's hard enough for an adult to

deal with RA.

>

> My life has changed in so many ways I wouldn't know where to begin.

> I'm now 50, so I've dealt with a lot in all these years. There has

> been some positive things about having RA, mainly I was able to stay

> home with my kids. The negative was loosing my career and a lot of

> the physical activities that I once enjoyed. I've learned to adapt to

> what ever life dealt me. Treatment options are much different today

> than when I was diagnosed, so hopefully your disease will be well

> controlled. RA is a difficult disease to diagnose, so hopefully you

> won't have it.

> a

>

>

>

>

>

> On Sat, 19 Feb 2005 23:37:34 -0000, dianaenxing <dianaenxing@y...>

wrote:

> >

> >

> > My doctor and I are pretty sure it is RA and I think I've finally

> > accepted that. I did not want to believe it at first because of my

> > age--I'm only 24 and newly married. Is there anyone out there close

> > to my age who has or is experiencing this?? I would really like to

> > chat about how you're life has changed. Thanks a bunch.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

-,

I can relate to what you wrote , I am 30 and was diagnosed last

year. I have a 19 month old baby and have been married for 4 years. I

myself could not believe that I have RA. I don't even know anyone who

has it. I kept making my doctor test me over and over just to be sure.

The good news is we caught it in the very beging stages so I have no

erosion or damage. Now they have me on methotratiate, enbrel and

celebrex. For awhile I was depressed because my life had changed so

much in such a short time.The pain never seemed to go away and I was

so tired. I felt so old so fast. I am young but have more in common

with older people because we compair meds. crazy!!!! But now I can

honestly say I am more positive about my future because the meds that

I am on have seen to be working. I don't hurt as bad and I have energy

to live my life almost the same as before. Just have to take better

care of me. I think the most frusterating part of all of this is

getting the meds right. Its a shot and miss game, but I can say for me

they finally hit the mark. Just try to stay positive and live in the

moment. Take care and write back.

-- In , a <papola@g...> wrote:

> ,

> Sorry for my late response. I'm very behind on mail. I was around

> your age when I was diagnosed. Young children can get RA. It's

> called juvinile rheumatoid arthritis (JRA).

> I feel so bad for the children. It's hard enough for an adult to

deal with RA.

>

> My life has changed in so many ways I wouldn't know where to begin.

> I'm now 50, so I've dealt with a lot in all these years. There has

> been some positive things about having RA, mainly I was able to stay

> home with my kids. The negative was loosing my career and a lot of

> the physical activities that I once enjoyed. I've learned to adapt to

> what ever life dealt me. Treatment options are much different today

> than when I was diagnosed, so hopefully your disease will be well

> controlled. RA is a difficult disease to diagnose, so hopefully you

> won't have it.

> a

>

>

>

>

>

> On Sat, 19 Feb 2005 23:37:34 -0000, dianaenxing <dianaenxing@y...>

wrote:

> >

> >

> > My doctor and I are pretty sure it is RA and I think I've finally

> > accepted that. I did not want to believe it at first because of my

> > age--I'm only 24 and newly married. Is there anyone out there close

> > to my age who has or is experiencing this?? I would really like to

> > chat about how you're life has changed. Thanks a bunch.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

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

wrote:

>

>

> My doctor and I are pretty sure it is RA and I think I've finally

> accepted that. I did not want to believe it at first because of my

> age--I'm only 24 and newly married. Is there anyone out there close

> to my age who has or is experiencing this?? I would really like to

> chat about how you're life has changed. Thanks a bunch.

>

Hi . I just joined the group today so I realize you have

probably had numerous replies to this already. I'm 31 and have had

RA for 3.5 years. I've been married almost a year and I am daily

learning to adust to what life keeps throwing at me (and my husband

too, of course). It seems like I can never get exactly the right

combination of drugs to make life seem " normal " . On top of that I

weened off of my meds 5 months ago to try to get pregnant.

Prednisone, vicadin, and the occasional shot of Cortisone seem to be

the only things keeping me going. I don't mean to sound like a

downer but I really feel the need to connect with some people that

know what living with RA is like. I met my husband after I already

had RA so he has never known me without it. Sometimes I feel like

that is a good thing. It's hard learning to take life one day at a

time (I'm a planner by nature). I always wake up and my first

thought is can I get out of bed today. The answer is always yes and

the day takes on a life of its own from there. Please keep us up to

date on your progress and experiences. Hang in there. Your life

isn't over it's just taking a little different path than expected.

That's not always a bad thing.

Jenn

[Guest guest]

>

>

> My doctor and I are pretty sure it is RA and I think I've finally

> accepted that. I did not want to believe it at first because of my

> age--I'm only 24 and newly married. Is there anyone out there close

> to my age who has or is experiencing this?? I would really like to

> chat about how you're life has changed. Thanks a bunch.

>

Hi . I just joined the group today so I realize you have

probably had numerous replies to this already. I'm 31 and have had

RA for 3.5 years. I've been married almost a year and I am daily

learning to adust to what life keeps throwing at me (and my husband

too, of course). It seems like I can never get exactly the right

combination of drugs to make life seem " normal " . On top of that I

weened off of my meds 5 months ago to try to get pregnant.

Prednisone, vicadin, and the occasional shot of Cortisone seem to be

the only things keeping me going. I don't mean to sound like a

downer but I really feel the need to connect with some people that

know what living with RA is like. I met my husband after I already

had RA so he has never known me without it. Sometimes I feel like

that is a good thing. It's hard learning to take life one day at a

time (I'm a planner by nature). I always wake up and my first

thought is can I get out of bed today. The answer is always yes and

the day takes on a life of its own from there. Please keep us up to

date on your progress and experiences. Hang in there. Your life

isn't over it's just taking a little different path than expected.

That's not always a bad thing.

Jenn

[Guest guest]

HI DIANA MY NAME IS KIM, I AM 25 YRS. OLD AND HAVE ONLY BEEN MARRIED A YEAR AND

2 MONTHS. WHEN I FOUND OUT ABOUT ALL THIS RA STUFF I WAS MARRIED JUST A YEAR.

AND TO TELL YOU THE TRUTH IT'S MAKING LIFE A WHOLE LOT HARRDER. I WILL NEVER BE

ABLE TO WORK OUT IN THE WORLD AGAIN. I'M STARTING A DAYCARE IN MY HOME FOR

SPECIAL NEEDS KIDS. I CANNOT DO A LOT OF STUFF I USED TO. I TAKE 8 PILLS A DAY.

MY DOCTOR KICKED UP MY PREONE. SO, FOR THE PAST TWO DAYS MY HAND BEEN NUMB.

THE PAIN IS SO ROUGH. AND IT DON'T STOP. I MUST HAVE 1 TO 2 BREAK DOWNS A WEEK

FROM THIS RA. WARM WATER HELPS FOR THE TIME YOUR HANDS ARE IN THE WATER. I HAVE

TO TAKE A SHOWER FIRST THING IN THE MORNING OR I CANNOT USE MY HANDS. I CANNOT

FIND THE GOOD OF THIS RA, AND I CANNOT LOOK ON THE BRIGHT SIDE YET. I HAVE NOT

COME TO THAT POINT. MY HUSBAND IS PRETTY GOOD ABOUT IT. I HOPE YOURS IS GOOD TO

YOU AND UNDERSTANDS. DO YOU WORK? WHERE DO YOU LIVE? I LIVE IN FLA. DO YOU EVER

GET TIRED? I DO A LOT. WELL, WRITE BACK. SORRY

ABOUT MY NEGATIVITY BUT I'M NOT TO THE GOOD POINT YET I WAS JUST DX IN JAN.

THIS YEAR.

LOVE,

KIM

<jenndela2000@...> wrote:

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

wrote:

>

>

> My doctor and I are pretty sure it is RA and I think I've finally

> accepted that. I did not want to believe it at first because of my

> age--I'm only 24 and newly married. Is there anyone out there close

> to my age who has or is experiencing this?? I would really like to

> chat about how you're life has changed. Thanks a bunch.

>

Hi . I just joined the group today so I realize you have

probably had numerous replies to this already. I'm 31 and have had

RA for 3.5 years. I've been married almost a year and I am daily

learning to adust to what life keeps throwing at me (and my husband

too, of course). It seems like I can never get exactly the right

combination of drugs to make life seem " normal " . On top of that I

weened off of my meds 5 months ago to try to get pregnant.

Prednisone, vicadin, and the occasional shot of Cortisone seem to be

the only things keeping me going. I don't mean to sound like a

downer but I really feel the need to connect with some people that

know what living with RA is like. I met my husband after I already

had RA so he has never known me without it. Sometimes I feel like

that is a good thing. It's hard learning to take life one day at a

time (I'm a planner by nature). I always wake up and my first

thought is can I get out of bed today. The answer is always yes and

the day takes on a life of its own from there. Please keep us up to

date on your progress and experiences. Hang in there. Your life

isn't over it's just taking a little different path than expected.

That's not always a bad thing.

Jenn

[Guest guest]

HI DIANA MY NAME IS KIM, I AM 25 YRS. OLD AND HAVE ONLY BEEN MARRIED A YEAR AND

2 MONTHS. WHEN I FOUND OUT ABOUT ALL THIS RA STUFF I WAS MARRIED JUST A YEAR.

AND TO TELL YOU THE TRUTH IT'S MAKING LIFE A WHOLE LOT HARRDER. I WILL NEVER BE

ABLE TO WORK OUT IN THE WORLD AGAIN. I'M STARTING A DAYCARE IN MY HOME FOR

SPECIAL NEEDS KIDS. I CANNOT DO A LOT OF STUFF I USED TO. I TAKE 8 PILLS A DAY.

MY DOCTOR KICKED UP MY PREONE. SO, FOR THE PAST TWO DAYS MY HAND BEEN NUMB.

THE PAIN IS SO ROUGH. AND IT DON'T STOP. I MUST HAVE 1 TO 2 BREAK DOWNS A WEEK

FROM THIS RA. WARM WATER HELPS FOR THE TIME YOUR HANDS ARE IN THE WATER. I HAVE

TO TAKE A SHOWER FIRST THING IN THE MORNING OR I CANNOT USE MY HANDS. I CANNOT

FIND THE GOOD OF THIS RA, AND I CANNOT LOOK ON THE BRIGHT SIDE YET. I HAVE NOT

COME TO THAT POINT. MY HUSBAND IS PRETTY GOOD ABOUT IT. I HOPE YOURS IS GOOD TO

YOU AND UNDERSTANDS. DO YOU WORK? WHERE DO YOU LIVE? I LIVE IN FLA. DO YOU EVER

GET TIRED? I DO A LOT. WELL, WRITE BACK. SORRY

ABOUT MY NEGATIVITY BUT I'M NOT TO THE GOOD POINT YET I WAS JUST DX IN JAN.

THIS YEAR.

LOVE,

KIM

<jenndela2000@...> wrote:

>

>

> My doctor and I are pretty sure it is RA and I think I've finally

> accepted that. I did not want to believe it at first because of my

> age--I'm only 24 and newly married. Is there anyone out there close

> to my age who has or is experiencing this?? I would really like to

> chat about how you're life has changed. Thanks a bunch.

>

Hi . I just joined the group today so I realize you have

probably had numerous replies to this already. I'm 31 and have had

RA for 3.5 years. I've been married almost a year and I am daily

learning to adust to what life keeps throwing at me (and my husband

too, of course). It seems like I can never get exactly the right

combination of drugs to make life seem " normal " . On top of that I

weened off of my meds 5 months ago to try to get pregnant.

Prednisone, vicadin, and the occasional shot of Cortisone seem to be

the only things keeping me going. I don't mean to sound like a

downer but I really feel the need to connect with some people that

know what living with RA is like. I met my husband after I already

had RA so he has never known me without it. Sometimes I feel like

that is a good thing. It's hard learning to take life one day at a

time (I'm a planner by nature). I always wake up and my first

thought is can I get out of bed today. The answer is always yes and

the day takes on a life of its own from there. Please keep us up to

date on your progress and experiences. Hang in there. Your life

isn't over it's just taking a little different path than expected.

That's not always a bad thing.

Jenn

[Guest guest]

Hi Kim,

I am a long time member who is very quiet lately due to the fact that I

haven't the time to keep up with the mails but I do try to read them and

pray for all my RA friends in need. Your mail however really touched me and

I thought it might give you some hope and encouragement to hear my little

story, which a lot of the other long time members know in great detail as

they went through it all with me at the time, so here goes!

I am 29 years old and was diagnosed with RA when I was 25, although I had

been having symptoms for years prior to that. My husband and I met young

(18) and were married when I was 22. Due to the fact that I also have

endometriosis we started trying for a baby pretty soon afterwards when I was

23. When I received the diagnosis of RA they wanted to put me straight onto

methotrexate BUT big problem is that we were trying desperately to

conceive... So they told me to try and hurry it up (big joke since I'd

already been trying for 2 years!) so that I could go onto the DMARD's. It

was a bit of a dilemma because when you are trying to conceive there are

several meds you can't take. Methotrexate and Plaquenil were out and even

anti-inflammatories can up your risk of miscarriage so they were out too. I

was in a very, very bad flare that lasted several months and affected pretty

much every joint in my body from my toes to my neck, even my jaw. I thought

that RA was the end of me - I couldn't drive my car, cut my meat, open any

jars, doors, fridges, I couldn't even squeeze my own toothpaste and my

husband would have to help me on and off the loo because my knees were too

sore to bend and my shoulders too sore to support me. It was terrifying to

be so dependant and I had many sleepless nights worrying about that my

husband was going to get sick of this new " crippled " me (he was wonderfully

supportive though and I'm very lucky to have that). My boss at the time was

a nightmare and actually turned around and told me I'd be in a wheelchair

soon and basically tried to get me to leave the company.

At the time my Rheumy decided the only thing to do was put me onto

Prednisone. I was assured it was the one thing that you could safely take

during pregnancy. I was very lucky and reacted to it wonderfully, I know

that it can be a drug with terrible side effects but it honestly gave me

back my life. Once I was on the correct dosage I was very functional again,

with the occasional medium flare but nothing like the major flare that I

was in when I was diagnosed. I found a new, much better, job and carried on

trying to make our baby. Finally two years after my diagnosis I was

PREGNANT!! I carried on with low dose prednisone throughout my pregnancy -

the catch with the Pred is that you can't just stop it straight away and I

had been on it for over 2 years by then - and managed to taper off it

completely by the time I was 7 months pregnant. I was by then in full

remission and had no symptoms at all. My little boy, Fabien was born on

15th June 2003, the best day of my life! He was a month premature and low

birth weight, he stopped growing when I was 7 1/2 months pregnant which they

blamed on the prednisone or the RA, my placenta was very small and calcified

which seems to be a possible side effect from Prednisone that I was not

informed about before, but he was healthy, beautiful and alive and we took

him home from the hospital when he was 10 days old.

My remission ended when my milk came in about 5 days after I gave birth. I

went into a flare and was devastated when the doctors told me that I

wouldn't be able to breastfeed because it was now time to start the DMARDS.

I was also really scared about how I was going to look after this little

baby when I was in so much pain, I couldn't even hold him properly never

mind bath him. After a very tearful visit from my Rheumy (she is wonderful

and was a breastfeeding mother at that time herself and she ended up crying

with me!) we came up with a plan to try and control the RA with Voltaren

(she didn't want me back on Prednisone) for as long as possible to give me

time to experience breastfeeding (it was really important to me). Here's

the best part of the story! My little boy is now almost 21 months old and

I'm still breastfeeding and am on absolutely NO medication whatsoever, my RA

is in almost complete remission.

I have made some changes in my life, stress is a huge trigger for me so I've

tried to cut down on stress by leaving my stressful banking job to do

something quieter for myself from home, I try to exercise, rest and eat well

but I know I am really lucky and blessed to have this window of calm and

health (I hope it's a window that lasts a lifetime but for now I'm taking it

one day at a time and enjoying it for what it is).

I hope this helps and gives you hope. My advice is to have a very long chat

with your Rheumy and your Gynaecologist, inform yourself about the different

meds and their affects (this group is a wealth of information) and make your

own decisions as well - only you know how much pain and risk you are

prepared to put up with to have a baby. My Rheumy has actually told me that

some women with Lupus take Plaquenil during pregnancy but check all this

with your doctor. It's nice if your Rheumy and your Gynae can also talk as

some meds might cause side effects your Gynae needs to look out for.

The majority of women go into remission during pregnancy, most also flare

soon after the birth so it's good to plan ahead to have someone to help you

if you need it, but you might just be one of the lucky ones and have a

longer lasting remission (I think a also said once she went into

remission after her first child until she was pregnant with her second,

a?).

I hope this helps. Please feel free to post me any time if you have any

questions. I wish you luck and baby blessings - they are so worth all the

worry and stress we go through to have them even if we have RA.

Take care and have a great weekend!

Heidi

P.S. To the rest of the group - especially my old friends Hi! Love you

all! I will try to find time to write a catch up mail soon!

P.P.S. I'm soon going to start trying for a little brother or sister for

Fabien so will need those magic RA prayers! ;-)

Re: [ ] Re: Newly diagnosed and have questions

>

>

>HI DIANA MY NAME IS KIM, I AM 25 YRS. OLD AND HAVE ONLY BEEN MARRIED A

YEAR AND 2 MONTHS. WHEN I FOUND OUT ABOUT ALL THIS RA STUFF I WAS MARRIED

JUST A YEAR. AND TO TELL YOU THE TRUTH IT'S MAKING LIFE A WHOLE LOT HARRDER.

I WILL NEVER BE ABLE TO WORK OUT IN THE WORLD AGAIN. I'M STARTING A DAYCARE

IN MY HOME FOR SPECIAL NEEDS KIDS. I CANNOT DO A LOT OF STUFF I USED TO. I

TAKE 8 PILLS A DAY. MY DOCTOR KICKED UP MY PREONE. SO, FOR THE PAST TWO

DAYS MY HAND BEEN NUMB. THE PAIN IS SO ROUGH. AND IT DON'T STOP. I MUST HAVE

1 TO 2 BREAK DOWNS A WEEK FROM THIS RA. WARM WATER HELPS FOR THE TIME YOUR

HANDS ARE IN THE WATER. I HAVE TO TAKE A SHOWER FIRST THING IN THE MORNING

OR I CANNOT USE MY HANDS. I CANNOT FIND THE GOOD OF THIS RA, AND I CANNOT

LOOK ON THE BRIGHT SIDE YET. I HAVE NOT COME TO THAT POINT. MY HUSBAND IS

PRETTY GOOD ABOUT IT. I HOPE YOURS IS GOOD TO YOU AND UNDERSTANDS. DO YOU

WORK? WHERE DO YOU LIVE? I LIVE IN FLA. DO YOU EVER GET TIRED? I DO A LOT.

WELL, WRITE BACK. SORRY

> ABOUT MY NEGATIVITY BUT I'M NOT TO THE GOOD POINT YET I WAS JUST DX IN

JAN. THIS YEAR.

>LOVE,

>KIM

>

> <jenndela2000@...> wrote:

>

>

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

>wrote:

>>

>>

>> My doctor and I are pretty sure it is RA and I think I've finally

>> accepted that. I did not want to believe it at first because of my

>> age--I'm only 24 and newly married. Is there anyone out there close

>> to my age who has or is experiencing this?? I would really like to

>> chat about how you're life has changed. Thanks a bunch.

>>

>

>

>Hi . I just joined the group today so I realize you have

>probably had numerous replies to this already. I'm 31 and have had

>RA for 3.5 years. I've been married almost a year and I am daily

>learning to adust to what life keeps throwing at me (and my husband

>too, of course). It seems like I can never get exactly the right

>combination of drugs to make life seem " normal " . On top of that I

>weened off of my meds 5 months ago to try to get pregnant.

>Prednisone, vicadin, and the occasional shot of Cortisone seem to be

>the only things keeping me going. I don't mean to sound like a

>downer but I really feel the need to connect with some people that

>know what living with RA is like. I met my husband after I already

>had RA so he has never known me without it. Sometimes I feel like

>that is a good thing. It's hard learning to take life one day at a

>time (I'm a planner by nature). I always wake up and my first

>thought is can I get out of bed today. The answer is always yes and

>the day takes on a life of its own from there. Please keep us up to

>date on your progress and experiences. Hang in there. Your life

>isn't over it's just taking a little different path than expected.

>That's not always a bad thing.

>

>

>

>

>Jenn

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Kim,

I am a long time member who is very quiet lately due to the fact that I

haven't the time to keep up with the mails but I do try to read them and

pray for all my RA friends in need. Your mail however really touched me and

I thought it might give you some hope and encouragement to hear my little

story, which a lot of the other long time members know in great detail as

they went through it all with me at the time, so here goes!

I am 29 years old and was diagnosed with RA when I was 25, although I had

been having symptoms for years prior to that. My husband and I met young

(18) and were married when I was 22. Due to the fact that I also have

endometriosis we started trying for a baby pretty soon afterwards when I was

23. When I received the diagnosis of RA they wanted to put me straight onto

methotrexate BUT big problem is that we were trying desperately to

conceive... So they told me to try and hurry it up (big joke since I'd

already been trying for 2 years!) so that I could go onto the DMARD's. It

was a bit of a dilemma because when you are trying to conceive there are

several meds you can't take. Methotrexate and Plaquenil were out and even

anti-inflammatories can up your risk of miscarriage so they were out too. I

was in a very, very bad flare that lasted several months and affected pretty

much every joint in my body from my toes to my neck, even my jaw. I thought

that RA was the end of me - I couldn't drive my car, cut my meat, open any

jars, doors, fridges, I couldn't even squeeze my own toothpaste and my

husband would have to help me on and off the loo because my knees were too

sore to bend and my shoulders too sore to support me. It was terrifying to

be so dependant and I had many sleepless nights worrying about that my

husband was going to get sick of this new " crippled " me (he was wonderfully

supportive though and I'm very lucky to have that). My boss at the time was

a nightmare and actually turned around and told me I'd be in a wheelchair

soon and basically tried to get me to leave the company.

At the time my Rheumy decided the only thing to do was put me onto

Prednisone. I was assured it was the one thing that you could safely take

during pregnancy. I was very lucky and reacted to it wonderfully, I know

that it can be a drug with terrible side effects but it honestly gave me

back my life. Once I was on the correct dosage I was very functional again,

with the occasional medium flare but nothing like the major flare that I

was in when I was diagnosed. I found a new, much better, job and carried on

trying to make our baby. Finally two years after my diagnosis I was

PREGNANT!! I carried on with low dose prednisone throughout my pregnancy -

the catch with the Pred is that you can't just stop it straight away and I

had been on it for over 2 years by then - and managed to taper off it

completely by the time I was 7 months pregnant. I was by then in full

remission and had no symptoms at all. My little boy, Fabien was born on

15th June 2003, the best day of my life! He was a month premature and low

birth weight, he stopped growing when I was 7 1/2 months pregnant which they

blamed on the prednisone or the RA, my placenta was very small and calcified

which seems to be a possible side effect from Prednisone that I was not

informed about before, but he was healthy, beautiful and alive and we took

him home from the hospital when he was 10 days old.

My remission ended when my milk came in about 5 days after I gave birth. I

went into a flare and was devastated when the doctors told me that I

wouldn't be able to breastfeed because it was now time to start the DMARDS.

I was also really scared about how I was going to look after this little

baby when I was in so much pain, I couldn't even hold him properly never

mind bath him. After a very tearful visit from my Rheumy (she is wonderful

and was a breastfeeding mother at that time herself and she ended up crying

with me!) we came up with a plan to try and control the RA with Voltaren

(she didn't want me back on Prednisone) for as long as possible to give me

time to experience breastfeeding (it was really important to me). Here's

the best part of the story! My little boy is now almost 21 months old and

I'm still breastfeeding and am on absolutely NO medication whatsoever, my RA

is in almost complete remission.

I have made some changes in my life, stress is a huge trigger for me so I've

tried to cut down on stress by leaving my stressful banking job to do

something quieter for myself from home, I try to exercise, rest and eat well

but I know I am really lucky and blessed to have this window of calm and

health (I hope it's a window that lasts a lifetime but for now I'm taking it

one day at a time and enjoying it for what it is).

I hope this helps and gives you hope. My advice is to have a very long chat

with your Rheumy and your Gynaecologist, inform yourself about the different

meds and their affects (this group is a wealth of information) and make your

own decisions as well - only you know how much pain and risk you are

prepared to put up with to have a baby. My Rheumy has actually told me that

some women with Lupus take Plaquenil during pregnancy but check all this

with your doctor. It's nice if your Rheumy and your Gynae can also talk as

some meds might cause side effects your Gynae needs to look out for.

The majority of women go into remission during pregnancy, most also flare

soon after the birth so it's good to plan ahead to have someone to help you

if you need it, but you might just be one of the lucky ones and have a

longer lasting remission (I think a also said once she went into

remission after her first child until she was pregnant with her second,

a?).

I hope this helps. Please feel free to post me any time if you have any

questions. I wish you luck and baby blessings - they are so worth all the

worry and stress we go through to have them even if we have RA.

Take care and have a great weekend!

Heidi

P.S. To the rest of the group - especially my old friends Hi! Love you

all! I will try to find time to write a catch up mail soon!

P.P.S. I'm soon going to start trying for a little brother or sister for

Fabien so will need those magic RA prayers! ;-)

Re: [ ] Re: Newly diagnosed and have questions

>

>

>HI DIANA MY NAME IS KIM, I AM 25 YRS. OLD AND HAVE ONLY BEEN MARRIED A

YEAR AND 2 MONTHS. WHEN I FOUND OUT ABOUT ALL THIS RA STUFF I WAS MARRIED

JUST A YEAR. AND TO TELL YOU THE TRUTH IT'S MAKING LIFE A WHOLE LOT HARRDER.

I WILL NEVER BE ABLE TO WORK OUT IN THE WORLD AGAIN. I'M STARTING A DAYCARE

IN MY HOME FOR SPECIAL NEEDS KIDS. I CANNOT DO A LOT OF STUFF I USED TO. I

TAKE 8 PILLS A DAY. MY DOCTOR KICKED UP MY PREONE. SO, FOR THE PAST TWO

DAYS MY HAND BEEN NUMB. THE PAIN IS SO ROUGH. AND IT DON'T STOP. I MUST HAVE

1 TO 2 BREAK DOWNS A WEEK FROM THIS RA. WARM WATER HELPS FOR THE TIME YOUR

HANDS ARE IN THE WATER. I HAVE TO TAKE A SHOWER FIRST THING IN THE MORNING

OR I CANNOT USE MY HANDS. I CANNOT FIND THE GOOD OF THIS RA, AND I CANNOT

LOOK ON THE BRIGHT SIDE YET. I HAVE NOT COME TO THAT POINT. MY HUSBAND IS

PRETTY GOOD ABOUT IT. I HOPE YOURS IS GOOD TO YOU AND UNDERSTANDS. DO YOU

WORK? WHERE DO YOU LIVE? I LIVE IN FLA. DO YOU EVER GET TIRED? I DO A LOT.

WELL, WRITE BACK. SORRY

> ABOUT MY NEGATIVITY BUT I'M NOT TO THE GOOD POINT YET I WAS JUST DX IN

JAN. THIS YEAR.

>LOVE,

>KIM

>

> <jenndela2000@...> wrote:

>

>

>

>>

>>

>> My doctor and I are pretty sure it is RA and I think I've finally

>> accepted that. I did not want to believe it at first because of my

>> age--I'm only 24 and newly married. Is there anyone out there close

>> to my age who has or is experiencing this?? I would really like to

>> chat about how you're life has changed. Thanks a bunch.

>>

>

>

>Hi . I just joined the group today so I realize you have

>probably had numerous replies to this already. I'm 31 and have had

>RA for 3.5 years. I've been married almost a year and I am daily

>learning to adust to what life keeps throwing at me (and my husband

>too, of course). It seems like I can never get exactly the right

>combination of drugs to make life seem " normal " . On top of that I

>weened off of my meds 5 months ago to try to get pregnant.

>Prednisone, vicadin, and the occasional shot of Cortisone seem to be

>the only things keeping me going. I don't mean to sound like a

>downer but I really feel the need to connect with some people that

>know what living with RA is like. I met my husband after I already

>had RA so he has never known me without it. Sometimes I feel like

>that is a good thing. It's hard learning to take life one day at a

>time (I'm a planner by nature). I always wake up and my first

>thought is can I get out of bed today. The answer is always yes and

>the day takes on a life of its own from there. Please keep us up to

>date on your progress and experiences. Hang in there. Your life

>isn't over it's just taking a little different path than expected.

>That's not always a bad thing.

>

>

>

>

>Jenn

>

>

>

>

>

>

>

>

>

[Guest guest]

Hiedi,

So nice to hear from you!!! I'm glad all is going so well for you and

that Fabien is doing well also.

Yes it was me that went into remission after my first child, which

lasted until my second. I'm thrilled that you are still in

remission. Stress also is my biggest trigger. Stress will guarantee

me to flare. Hopefully since you've eliminated your stress, RA will

stay away. Have fun trying for Fabien's brother or sister! I am so

happy for all of you. I remember well how awful things were for you

when you first came to our group. I hope your story will help others

to know that there can be a good life in spite of RA.

a

On Fri, 11 Mar 2005 16:50:30 +0400, n & Heidi <octone@...> wrote:

> Hi Kim,

>

> I am a long time member who is very quiet lately due to the fact that I

> haven't the time to keep up with the mails but I do try to read them and

> pray for all my RA friends in need. Your mail however really touched me

> and

> I thought it might give you some hope and encouragement to hear my little

> story, which a lot of the other long time members know in great detail as

> they went through it all with me at the time, so here goes!

>

> I am 29 years old and was diagnosed with RA when I was 25, although I had

> been having symptoms for years prior to that. My husband and I met young

> (18) and were married when I was 22. Due to the fact that I also have

> endometriosis we started trying for a baby pretty soon afterwards when I

> was

> 23. When I received the diagnosis of RA they wanted to put me straight

> onto

> methotrexate BUT big problem is that we were trying desperately to

> conceive... So they told me to try and hurry it up (big joke since I'd

> already been trying for 2 years!) so that I could go onto the DMARD's. It

> was a bit of a dilemma because when you are trying to conceive there are

> several meds you can't take. Methotrexate and Plaquenil were out and even

> anti-inflammatories can up your risk of miscarriage so they were out too.

> I

> was in a very, very bad flare that lasted several months and affected

> pretty

> much every joint in my body from my toes to my neck, even my jaw. I

> thought

> that RA was the end of me - I couldn't drive my car, cut my meat, open any

> jars, doors, fridges, I couldn't even squeeze my own toothpaste and my

> husband would have to help me on and off the loo because my knees were too

> sore to bend and my shoulders too sore to support me. It was terrifying to

> be so dependant and I had many sleepless nights worrying about that my

> husband was going to get sick of this new " crippled " me (he was wonderfully

> supportive though and I'm very lucky to have that). My boss at the time

> was

> a nightmare and actually turned around and told me I'd be in a wheelchair

> soon and basically tried to get me to leave the company.

>

> At the time my Rheumy decided the only thing to do was put me onto

> Prednisone. I was assured it was the one thing that you could safely take

> during pregnancy. I was very lucky and reacted to it wonderfully, I know

> that it can be a drug with terrible side effects but it honestly gave me

> back my life. Once I was on the correct dosage I was very functional

> again,

> with the occasional medium flare but nothing like the major flare that I

> was in when I was diagnosed. I found a new, much better, job and carried

> on

> trying to make our baby. Finally two years after my diagnosis I was

> PREGNANT!! I carried on with low dose prednisone throughout my pregnancy -

> the catch with the Pred is that you can't just stop it straight away and I

> had been on it for over 2 years by then - and managed to taper off it

> completely by the time I was 7 months pregnant. I was by then in full

> remission and had no symptoms at all. My little boy, Fabien was born on

> 15th June 2003, the best day of my life! He was a month premature and low

> birth weight, he stopped growing when I was 7 1/2 months pregnant which

> they

> blamed on the prednisone or the RA, my placenta was very small and

> calcified

> which seems to be a possible side effect from Prednisone that I was not

> informed about before, but he was healthy, beautiful and alive and we took

> him home from the hospital when he was 10 days old.

>

> My remission ended when my milk came in about 5 days after I gave birth. I

> went into a flare and was devastated when the doctors told me that I

> wouldn't be able to breastfeed because it was now time to start the DMARDS.

> I was also really scared about how I was going to look after this little

> baby when I was in so much pain, I couldn't even hold him properly never

> mind bath him. After a very tearful visit from my Rheumy (she is wonderful

> and was a breastfeeding mother at that time herself and she ended up crying

> with me!) we came up with a plan to try and control the RA with Voltaren

> (she didn't want me back on Prednisone) for as long as possible to give me

> time to experience breastfeeding (it was really important to me). Here's

> the best part of the story! My little boy is now almost 21 months old and

> I'm still breastfeeding and am on absolutely NO medication whatsoever, my

> RA

> is in almost complete remission.

>

> I have made some changes in my life, stress is a huge trigger for me so

> I've

> tried to cut down on stress by leaving my stressful banking job to do

> something quieter for myself from home, I try to exercise, rest and eat

> well

> but I know I am really lucky and blessed to have this window of calm and

> health (I hope it's a window that lasts a lifetime but for now I'm taking

> it

> one day at a time and enjoying it for what it is).

>

> I hope this helps and gives you hope. My advice is to have a very long

> chat

> with your Rheumy and your Gynaecologist, inform yourself about the

> different

> meds and their affects (this group is a wealth of information) and make

> your

> own decisions as well - only you know how much pain and risk you are

> prepared to put up with to have a baby. My Rheumy has actually told me

> that

> some women with Lupus take Plaquenil during pregnancy but check all this

> with your doctor. It's nice if your Rheumy and your Gynae can also talk as

> some meds might cause side effects your Gynae needs to look out for.

> The majority of women go into remission during pregnancy, most also flare

> soon after the birth so it's good to plan ahead to have someone to help you

> if you need it, but you might just be one of the lucky ones and have a

> longer lasting remission (I think a also said once she went into

> remission after her first child until she was pregnant with her second,

> a?).

>

> I hope this helps. Please feel free to post me any time if you have any

> questions. I wish you luck and baby blessings - they are so worth all the

> worry and stress we go through to have them even if we have RA.

>

> Take care and have a great weekend!

> Heidi

> P.S. To the rest of the group - especially my old friends Hi! Love you

> all! I will try to find time to write a catch up mail soon!

> P.P.S. I'm soon going to start trying for a little brother or sister for

> Fabien so will need those magic RA prayers! ;-)

>

>

>

[Guest guest]

Hiedi,

So nice to hear from you!!! I'm glad all is going so well for you and

that Fabien is doing well also.

Yes it was me that went into remission after my first child, which

lasted until my second. I'm thrilled that you are still in

remission. Stress also is my biggest trigger. Stress will guarantee

me to flare. Hopefully since you've eliminated your stress, RA will

stay away. Have fun trying for Fabien's brother or sister! I am so

happy for all of you. I remember well how awful things were for you

when you first came to our group. I hope your story will help others

to know that there can be a good life in spite of RA.

a

On Fri, 11 Mar 2005 16:50:30 +0400, n & Heidi <octone@...> wrote:

> Hi Kim,

>

> I am a long time member who is very quiet lately due to the fact that I

> haven't the time to keep up with the mails but I do try to read them and

> pray for all my RA friends in need. Your mail however really touched me

> and

> I thought it might give you some hope and encouragement to hear my little

> story, which a lot of the other long time members know in great detail as

> they went through it all with me at the time, so here goes!

>

> I am 29 years old and was diagnosed with RA when I was 25, although I had

> been having symptoms for years prior to that. My husband and I met young

> (18) and were married when I was 22. Due to the fact that I also have

> endometriosis we started trying for a baby pretty soon afterwards when I

> was

> 23. When I received the diagnosis of RA they wanted to put me straight

> onto

> methotrexate BUT big problem is that we were trying desperately to

> conceive... So they told me to try and hurry it up (big joke since I'd

> already been trying for 2 years!) so that I could go onto the DMARD's. It

> was a bit of a dilemma because when you are trying to conceive there are

> several meds you can't take. Methotrexate and Plaquenil were out and even

> anti-inflammatories can up your risk of miscarriage so they were out too.

> I

> was in a very, very bad flare that lasted several months and affected

> pretty

> much every joint in my body from my toes to my neck, even my jaw. I

> thought

> that RA was the end of me - I couldn't drive my car, cut my meat, open any

> jars, doors, fridges, I couldn't even squeeze my own toothpaste and my

> husband would have to help me on and off the loo because my knees were too

> sore to bend and my shoulders too sore to support me. It was terrifying to

> be so dependant and I had many sleepless nights worrying about that my

> husband was going to get sick of this new " crippled " me (he was wonderfully

> supportive though and I'm very lucky to have that). My boss at the time

> was

> a nightmare and actually turned around and told me I'd be in a wheelchair

> soon and basically tried to get me to leave the company.

>

> At the time my Rheumy decided the only thing to do was put me onto

> Prednisone. I was assured it was the one thing that you could safely take

> during pregnancy. I was very lucky and reacted to it wonderfully, I know

> that it can be a drug with terrible side effects but it honestly gave me

> back my life. Once I was on the correct dosage I was very functional

> again,

> with the occasional medium flare but nothing like the major flare that I

> was in when I was diagnosed. I found a new, much better, job and carried

> on

> trying to make our baby. Finally two years after my diagnosis I was

> PREGNANT!! I carried on with low dose prednisone throughout my pregnancy -

> the catch with the Pred is that you can't just stop it straight away and I

> had been on it for over 2 years by then - and managed to taper off it

> completely by the time I was 7 months pregnant. I was by then in full

> remission and had no symptoms at all. My little boy, Fabien was born on

> 15th June 2003, the best day of my life! He was a month premature and low

> birth weight, he stopped growing when I was 7 1/2 months pregnant which

> they

> blamed on the prednisone or the RA, my placenta was very small and

> calcified

> which seems to be a possible side effect from Prednisone that I was not

> informed about before, but he was healthy, beautiful and alive and we took

> him home from the hospital when he was 10 days old.

>

> My remission ended when my milk came in about 5 days after I gave birth. I

> went into a flare and was devastated when the doctors told me that I

> wouldn't be able to breastfeed because it was now time to start the DMARDS.

> I was also really scared about how I was going to look after this little

> baby when I was in so much pain, I couldn't even hold him properly never

> mind bath him. After a very tearful visit from my Rheumy (she is wonderful

> and was a breastfeeding mother at that time herself and she ended up crying

> with me!) we came up with a plan to try and control the RA with Voltaren

> (she didn't want me back on Prednisone) for as long as possible to give me

> time to experience breastfeeding (it was really important to me). Here's

> the best part of the story! My little boy is now almost 21 months old and

> I'm still breastfeeding and am on absolutely NO medication whatsoever, my

> RA

> is in almost complete remission.

>

> I have made some changes in my life, stress is a huge trigger for me so

> I've

> tried to cut down on stress by leaving my stressful banking job to do

> something quieter for myself from home, I try to exercise, rest and eat

> well

> but I know I am really lucky and blessed to have this window of calm and

> health (I hope it's a window that lasts a lifetime but for now I'm taking

> it

> one day at a time and enjoying it for what it is).

>

> I hope this helps and gives you hope. My advice is to have a very long

> chat

> with your Rheumy and your Gynaecologist, inform yourself about the

> different

> meds and their affects (this group is a wealth of information) and make

> your

> own decisions as well - only you know how much pain and risk you are

> prepared to put up with to have a baby. My Rheumy has actually told me

> that

> some women with Lupus take Plaquenil during pregnancy but check all this

> with your doctor. It's nice if your Rheumy and your Gynae can also talk as

> some meds might cause side effects your Gynae needs to look out for.

> The majority of women go into remission during pregnancy, most also flare

> soon after the birth so it's good to plan ahead to have someone to help you

> if you need it, but you might just be one of the lucky ones and have a

> longer lasting remission (I think a also said once she went into

> remission after her first child until she was pregnant with her second,

> a?).

>

> I hope this helps. Please feel free to post me any time if you have any

> questions. I wish you luck and baby blessings - they are so worth all the

> worry and stress we go through to have them even if we have RA.

>

> Take care and have a great weekend!

> Heidi

> P.S. To the rest of the group - especially my old friends Hi! Love you

> all! I will try to find time to write a catch up mail soon!

> P.P.S. I'm soon going to start trying for a little brother or sister for

> Fabien so will need those magic RA prayers! ;-)

>

>

>