Re: Update on pregnant member, had my baby on 4/14/04! :)

[Guest guest]

Hi ,

I am so glad that you have a healthy baby, sorry there was the added

stress of stupid people, basically not paying attention. I do not

take " pain meds " . I do take anti-imflammatory, Enbrel and

Sulfasalizine though. My PA is doing so well with this drug combo

that we are decreasing the sulfasalizine and preparing to come off

of completely. One of the PA's at my Ear specialist actually was

telling me of the research beind done at Mayo,She used to work at

Mayo, she was telling me that usually PA does go into remission

during pregnancy, but generally afterwards does infact usually have

a bad flare up after pregnancy. Just kind of curious which one it

is. Maybe both. I hope all goes well with you and Hannah. Good Luck!

Keli

> Hi Everyone!

> Things have been really busy since my beautiful baby Hannah has

come into the world but its all my dreams and wishes come true! I

am glad to report that all of Hannah's pediatrician's have said that

she has not been affected by any of the medications I had to take

for my PA, neither the Enbrel or my pain medication. I definitely

learned things going through pregnancy with chronic diseases, the

one thing that surprised me the most was my rheumy, a professor at

the University of Minnesota and a doc at the Mayo Clinic, told me

that PA does not go into remission during pregnancy like it does for

pregnancy women with RA. He said that in his experience the PA will

either stay the same or get worse and unfortunately in my case it

got worse with each passing month of the pregnancy. In my eighth

month of pregnancy I pressured my rheumy to start me on Enbrel, he

wanted me to wait until the pregnancy was over, but my flare was

getting worse, to the point that walking was becoming more difficult

so with the blessing of my perinatologist I started it, and like I

said Hannah is a healthy 5 week old.

>

> So far the Enbrel is going well for me though I am not taking

anything else with it because I am breastfeeding Hannah and my

husband and I want to have at least one more child. I have taken

MTX before and had a good response to it so once all the child

bearing and breastfeeding is done I plan on going back on MTX, but

not for a few years. The Enbrel has helped my skin alot though my

feet are still in bad shape to the point that they are bleeding and

I must wear nylon socks to keep moisture in. I have spoken to my

rheumy about adding a safer immuno-suppressive drug that I can take

while breastfeeding to help the Enbrel but he wants to see if the

Enbrel kicks in more that it has and wants me to wait for a few more

weeks. My goal is to get off Methadone for pain control and just

use vicodin when needed, right now I take both daily for pain

control. My experience is when my disease is under control I don't

need much in the way of pain meds. We had huge issues with me being

on Methadone when I went to give birth to Hannah even though my

husband and I did everything we could to avoid them. Our concern

was that someone would read my chart on the hospital, see I'm on

methadone and assume I was a heroin addict instead of reading that I

use it for pain control. My OB had it plastered all over my chart

that I was taking it for pain control, but still this awful

situation happened and a stupid nurse actually wrote in my

daughter's chart that " mom is a narcotic's addict " and ordered drug

testing on Hannah 20 minutes after she was born! The problem ended

up being compounded by a social worker at the hospital misreading

the results of the drug test and calling child protective services

telling them that Hannah had actually tested positive for every drug

under the sun, what the test actually read was that she tested

negative, not positive! I got home from the hospital on a Monday

and that Friday I had CPS at my door wanting me to submit myself and

my daughter to a drug test. Luckily I had a CPS worker who had a

brain and could see that something was wrong with the situation as

the first test was showing everything was negative and then the

social worker at the hospital was saying the second screening was

showing everything positive so instead of taking my daughter away

from me at that point he just wanted me to go for another test. The

good things that have come from this awful situation is that the

hospital has had several education meetings with nurses in the

maternity ward, taught by doctors in the pain management clinic I go

to, to teach them about chronic pain conditions and pain management

and what meds are used for pain control, and especially not to jump

to conclusions that patients are narcotic addicts just because they

use a particular med or take them on a chronic basis. Its

frustrating that this has happened to me as I know that none of this

would have happened to a patient who had to take any other med for a

chronic condition, but it happened to me because of being on

methadone. The other positive thing is that Hannah's drug test came

back totally negative so it told us that none of the pain meds that

I am taking are crossing into my breastmilk.

>

> I pray my little baby never has to fight with these awful diseases

like I have, thats one of the reasons we decided to breastfeed her.

She has had a bit of eczema, but thats kinda normal for babies and

has seemed to clear with the normal treatment of lotions. I'm

grateful for this group and all the wonderful people here sharing

information, everyone is so great!!!

>

> Axelrod

> Bloomington, MN

>

> [Editor's Note: Your impressively-credentialed doc, who said

pregnant PA patients' symptoms stay the same or get worse, may be a

little too quick to dismiss the notion PA ameliorates during

pregnancy. On the other hand, I have great respect for the Mayo

Clinic's level of expertise. What I know about the subject is based

on anecdotal evidence, from this site and elsewhere. Perhaps some of

the women who have made the case their PA lessened while pregnant

could offer their testimony. :-)

>

> D.]

>

>

>

[Guest guest]

Dear and ,

First of all , congratulations! I'm so happy to hear of your baby and

how healthy she is. Truly my best times in my life, (and I know in our

feminist world, it's not a really popular feeling), where when my two girls

were born. You had a lot of pressure to deal with on top of " just having "

a baby. Dealing with PA and being pregnant can't be fun, since dealing with

PA isn't fun at anytime as far as I can tell.

I've considered going on methadone several times, and in fact I spoke to my

pain specialist about it yesterday. Right now I'm in such a mess flare wise

and with other circumstances and problems that are come up, he doesn't want

to change anything until I get more under control. I figured he would feel

that way, but at least we have at least brought it up. I've been on Kadian,

which is a time-released morphine now for almost 4 years. I've always been

scared of the stigma associated with methadone, but after you being so brave

I admit I feel like real baby.

I also realize that unless we do all stand up and hold our ground like you

did with your sweet little girl, that the prejudices against pain medication

will never end. We all know that there are abusers out there and they make

it hard on all of us. I run into ignorant people everyday and sometimes,

actually most of the time I do ok and just explain things to them.and hope

some little part gets through. Yesterday I got pretty frustrated with my

lung doctor because she said she didn't' " get " the pain or the fact that I

don't move that much.

I finally said well with PA, RA, fibromyalgia, TMJ, myofascial pain

syndrome, erythromelalgia, RSD, and not breathing well with asthma, throw in

congestive heart failure and edema in my feet and knees and pain does sort

of figure into my daily routine. I do like her as an asthma doctor, but I'

ve only seen her 2 times so far. I guess she has a way to go learning to

deal with me. When I run into doctors like that I think it's no wonder we

still have ignorant people concerning pain control. I still wish there was

a way to let doctors truly you're your pain, if only for a short minute.

Believe me I don't wish pain on anyone and it breaks my heart to hear of

anyone or anything in pain, but sometimes I think that's the only way

certain people are going to get it. Even then a minute of pain doesn't

really give you a clue about chronic pain. When I get down or really have a

rough time I read the pain tips I've posted on the site before. I'll list

them again and I've actually thought of giving them out to doctor's who " don

't get it " , but I doubt they would even take the time to read the list. If

you have read this before and it's annoying to re read something, forgive

me. But with all the new members we have, I don't think it hurts to relist

it.

Knowing what you and go through with methadone and that I helps you

makes me have more courage and hopefully each day we advance in pain therapy

and fight over ignorance. Take care and thanks again to both of you.

Congratulations on that little girl. They grow up so fast and by the way; I

did raise two little feminists who are now 21 and 23.lol.

Love, Fran

Since so many of us deal with chronic pain on a daily basis, I

thought this article would be good to pass along. It might help to

give it to your loved ones when they have problems understanding

just what we go through on a daily basis. These are 12 tips that

might help someone out there.

Love, Fran

1. People with chronic pain seem unreliable (we can't count on

ourselves). When feeling better we promise things (and mean it);

when in serious pain, we may not even show up. Pain people need

the " rubber time " (flexible) found in South Pacific countries and

many aboriginal cultures.

2. An action or situation may result in pain several hours later, or

even the next day. Delayed pain is confusing to people who have

never experienced it.

3. Pain can inhibit listening and other communication skills. It's

like having someone shouting at you, or trying to talk with a fire

alarm going off in the room. The effect of pain on the mind can seem

like attention deficit disorder. So you may have to repeat a

request, or write things down for a person with chronic pain. Don't

take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that

wouldn't normally bother you may seem too loud or glaring.

5. Patience may seem short. We can't wait in a long line; can't wait

for a long, drawn out conversation.

6. Don't always ask " How are you? " unless you are genuinely prepared

to listen - it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually

very temporary). When in pain, a small task, like hanging out the

laundry, can seem like a huge wall, too high to climb over. An hour

later the same job may be quite okay. It is sane to be depressed

occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes

abates after a short rest. Chronic pain people appear to arrive and

fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or a

comfortable chair, is as important as knowing where a bathroom is. A

visit is much more enjoyable if the chronic pain person knows there

is a refuge if needed. A person with chronic pain may not want to go

somewhere that has no refuge (e.g. no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a

person in pain. Your offer of a pillow or a cup of tea can be a

really big thing to a person who is feeling temporarily helpless in

the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a

body-wide feeling of discomfort, with hard to describe pains in the

entire back, or in both legs, but not in one particular spot you can

point to. Our vocabulary for pain is very limited, compared to the

body's ability to feel varieties of discomfort.

12. We may not have a good " reason " for the pain. Medical science is

still limited in its understanding of pain. Many people have pain

that is not yet classified by doctors as an officially

recognized " disease " . That does not reduce the pain; it only reduces

our ability to give it a label, and to have you believe us.

My family thought this helped bring them just a little closer to

understanding what my life is like now. I hope it helps with your family.

Fran

[Editor's Note: Fran, the points raised in your article are superb--and

absolutely dead-on. You're right, that article deserves to be widely read--and

then discussed), by patients and their sig. others., and even our docs. A while

back (4-6 months ago), Orin (Moderator), Marti and I were discussing putting

together a presentation to be considered at conferences of rheumatologists,

raising (in a logical, cooperative manner) some of our issues, with the hope of

establishing communication between PA patients and the docs that treat us. But

(See #1 and #7 on your list), our project kinda fell apart. I haven't given up

on the project (and, if it does get going again, I would be extremely

pleased--if you had any time or inclination--if you cared to contribute to such

a project).

There are a couple of other issues that I'd like to discuss with you; I'll send

you a direct e-mail later this weekend.

Take Good Care,

D.]

peo [ ] Update on pregnant member, had my baby on

4/14/04!

Hi Everyone!

Things have been really busy since my beautiful baby Hannah has come into

the world but its all my dreams and wishes come true! I am glad to report

that all of Hannah's pediatrician's have said that she has not been affected

by any of the medications I had to take for my PA, neither the Enbrel or my

pain medication. I definitely learned things going through pregnancy with

chronic diseases, the one thing that surprised me the most was my rheumy, a

professor at the University of Minnesota and a doc at the Mayo Clinic, told

me that PA does not go into remission during pregnancy like it does for

pregnancy women with RA. He said that in his experience the PA will either

stay the same or get worse and unfortunately in my case it got worse with

each passing month of the pregnancy. In my eighth month of pregnancy I

pressured my rheumy to start me on Enbrel, he wanted me to wait until the

pregnancy was over, but my flare was getting worse, to the point that

walking was becoming more difficult so with the blessing of my

perinatologist I started it, and like I said Hannah is a healthy 5 week old.

So far the Enbrel is going well for me though I am not taking anything else

with it because I am breastfeeding Hannah and my husband and I want to have

at least one more child. I have taken MTX before and had a good response to

it so once all the child bearing and breastfeeding is done I plan on going

back on MTX, but not for a few years. The Enbrel has helped my skin alot

though my feet are still in bad shape to the point that they are bleeding

and I must wear nylon socks to keep moisture in. I have spoken to my rheumy

about adding a safer immuno-suppressive drug that I can take while

breastfeeding to help the Enbrel but he wants to see if the Enbrel kicks in

more that it has and wants me to wait for a few more weeks. My goal is to

get off Methadone for pain control and just use vicodin when needed, right

now I take both daily for pain control. My experience is when my disease is

under control I don't need much in the way of pain meds. We had huge issues

with me being on Methadone when I went to give birth to Hannah even though

my husband and I did everything we could to avoid them. Our concern was

that someone would read my chart on the hospital, see I'm on methadone and

assume I was a heroin addict instead of reading that I use it for pain

control. My OB had it plastered all over my chart that I was taking it for

pain control, but still this awful situation happened and a stupid nurse

actually wrote in my daughter's chart that " mom is a narcotic's addict " and

ordered drug testing on Hannah 20 minutes after she was born! The problem

ended up being compounded by a social worker at the hospital misreading the

results of the drug test and calling child protective services telling them

that Hannah had actually tested positive for every drug under the sun, what

the test actually read was that she tested negative, not positive! I got

home from the hospital on a Monday and that Friday I had CPS at my door

wanting me to submit myself and my daughter to a drug test. Luckily I had a

CPS worker who had a brain and could see that something was wrong with the

situation as the first test was showing everything was negative and then the

social worker at the hospital was saying the second screening was showing

everything positive so instead of taking my daughter away from me at that

point he just wanted me to go for another test. The good things that have

come from this awful situation is that the hospital has had several

education meetings with nurses in the maternity ward, taught by doctors in

the pain management clinic I go to, to teach them about chronic pain

conditions and pain management and what meds are used for pain control, and

especially not to jump to conclusions that patients are narcotic addicts

just because they use a particular med or take them on a chronic basis. Its

frustrating that this has happened to me as I know that none of this would

have happened to a patient who had to take any other med for a chronic

condition, but it happened to me because of being on methadone. The other

positive thing is that Hannah's drug test came back totally negative so it

told us that none of the pain meds that I am taking are crossing into my

breastmilk.

I pray my little baby never has to fight with these awful diseases like I

have, thats one of the reasons we decided to breastfeed her. She has had a

bit of eczema, but thats kinda normal for babies and has seemed to clear

with the normal treatment of lotions. I'm grateful for this group and all

the wonderful people here sharing information, everyone is so great!!!

Axelrod

Bloomington, MN

[Editor's Note: Your impressively-credentialed doc, who said pregnant PA

patients' symptoms stay the same or get worse, may be a little too quick to

dismiss the notion PA ameliorates during pregnancy. On the other hand, I

have great respect for the Mayo Clinic's level of expertise. What I know

about the subject is based on anecdotal evidence, from this site and

elsewhere. Perhaps some of the women who have made the case their PA

lessened while pregnant could offer their testimony. :-)

D.]

[Guest guest]

denise, i am so happy to hear that your little hannah is healthy. i can't belive

the attitude given to peoplewho take pain medication. you are automatically

labled an addict. my hubby has pa and i have a spine that is slowly breaking

down. i'm 22 and he is 27. i had my first and second sugeries in 2000. now the

entire lumbar region is disc-less. i have a 2 year old, hannah too. and if i

didn't take any meds i would be a useless mother. i wish there was something we

could say or do to change this. blessings to you and your new family. rachel

Axelrod <denise.axelrod@...> wrote:Hi Everyone!

Things have been really busy since my beautiful baby Hannah has come into the

world but its all my dreams and wishes come true! I am glad to report that all

of Hannah's pediatrician's have said that she has not been affected by any of

the medications I had to take for my PA, neither the Enbrel or my pain

medication. I definitely learned things going through pregnancy with chronic

diseases, the one thing that surprised me the most was my rheumy, a professor at

the University of Minnesota and a doc at the Mayo Clinic, told me that PA does

not go into remission during pregnancy like it does for pregnancy women with RA.

He said that in his experience the PA will either stay the same or get worse and

unfortunately in my case it got worse with each passing month of the pregnancy.

In my eighth month of pregnancy I pressured my rheumy to start me on Enbrel, he

wanted me to wait until the pregnancy was over, but my flare was getting worse,

to the point that walking was becoming more

difficult so with the blessing of my perinatologist I started it, and like I

said Hannah is a healthy 5 week old.

So far the Enbrel is going well for me though I am not taking anything else with

it because I am breastfeeding Hannah and my husband and I want to have at least

one more child. I have taken MTX before and had a good response to it so once

all the child bearing and breastfeeding is done I plan on going back on MTX, but

not for a few years. The Enbrel has helped my skin alot though my feet are

still in bad shape to the point that they are bleeding and I must wear nylon

socks to keep moisture in. I have spoken to my rheumy about adding a safer

immuno-suppressive drug that I can take while breastfeeding to help the Enbrel

but he wants to see if the Enbrel kicks in more that it has and wants me to wait

for a few more weeks. My goal is to get off Methadone for pain control and just

use vicodin when needed, right now I take both daily for pain control. My

experience is when my disease is under control I don't need much in the way of

pain meds. We had huge issues with me being on

Methadone when I went to give birth to Hannah even though my husband and I did

everything we could to avoid them. Our concern was that someone would read my

chart on the hospital, see I'm on methadone and assume I was a heroin addict

instead of reading that I use it for pain control. My OB had it plastered all

over my chart that I was taking it for pain control, but still this awful

situation happened and a stupid nurse actually wrote in my daughter's chart that

" mom is a narcotic's addict " and ordered drug testing on Hannah 20 minutes after

she was born! The problem ended up being compounded by a social worker at the

hospital misreading the results of the drug test and calling child protective

services telling them that Hannah had actually tested positive for every drug

under the sun, what the test actually read was that she tested negative, not

positive! I got home from the hospital on a Monday and that Friday I had CPS at

my door wanting me to submit myself and my daughter to

a drug test. Luckily I had a CPS worker who had a brain and could see that

something was wrong with the situation as the first test was showing everything

was negative and then the social worker at the hospital was saying the second

screening was showing everything positive so instead of taking my daughter away

from me at that point he just wanted me to go for another test. The good things

that have come from this awful situation is that the hospital has had several

education meetings with nurses in the maternity ward, taught by doctors in the

pain management clinic I go to, to teach them about chronic pain conditions and

pain management and what meds are used for pain control, and especially not to

jump to conclusions that patients are narcotic addicts just because they use a

particular med or take them on a chronic basis. Its frustrating that this has

happened to me as I know that none of this would have happened to a patient who

had to take any other med for a chronic

condition, but it happened to me because of being on methadone. The other

positive thing is that Hannah's drug test came back totally negative so it told

us that none of the pain meds that I am taking are crossing into my breastmilk.

I pray my little baby never has to fight with these awful diseases like I have,

thats one of the reasons we decided to breastfeed her. She has had a bit of

eczema, but thats kinda normal for babies and has seemed to clear with the

normal treatment of lotions. I'm grateful for this group and all the wonderful

people here sharing information, everyone is so great!!!

Axelrod

Bloomington, MN

[Editor's Note: Your impressively-credentialed doc, who said pregnant PA

patients' symptoms stay the same or get worse, may be a little too quick to

dismiss the notion PA ameliorates during pregnancy. On the other hand, I have

great respect for the Mayo Clinic's level of expertise. What I know about the

subject is based on anecdotal evidence, from this site and elsewhere. Perhaps

some of the women who have made the case their PA lessened while pregnant could

offer their testimony. :-)

D.]

[Guest guest]

Hey ! Congratulations. I spoke to you several times off list. I am

pregnant also. Due 8-27-04. I also convinced my OB and Rheumy to let me take

Enbrel. I started it about a month ago and feel Soooo much better!! My PA did

not get better with pregnancy, but got much worse. Everything is fine so far

with my baby as well. Hopefully more research will be done on Enbrel and

pregnancy and more women won't have to suffer for nine months. I am so glad

you all are doing well!! Take Care.

Lori

rachel dickus <rachellvbug@...> wrote:

denise, i am so happy to hear that your little hannah is healthy. i can't belive

the attitude given to peoplewho take pain medication. you are automatically

labled an addict. my hubby has pa and i have a spine that is slowly breaking

down. i'm 22 and he is 27. i had my first and second sugeries in 2000. now the

entire lumbar region is disc-less. i have a 2 year old, hannah too. and if i

didn't take any meds i would be a useless mother. i wish there was something we

could say or do to change this. blessings to you and your new family. rachel

[Guest guest]

,

Congratulations on your new baby girl! You've had to go through so much but

she's so worth it, isn't she? I was lucky because my joint pain got better

as my pregnancies progressed. Of course only six weeks after the baby was

born, I was in so much pain I wondered how I could care for them. I had to

wean them so I could get back on meds. Just a year ago I couldn't

breastfeed while on Enbrel because they weren't sure yet if it was safe

(that's what I was told). You're lucky you're able to nurse her. Enjoy

her!

Hugs,

Aprle