(((Andrea))) welcome back! and happy birthday to Rose!

Andrea, have you checked in with your doctor? Your symptoms may be part RA
and part something else...it may be a good idea to have some labs
done--cultures, too.
Most transfusions are safe, but there is always the chance of something not
being right. I am not trying to scare you, Andrea...I just truly think that
you need to talk to your doctor.
What meds are you taking? Perhaps they need increased or changed...
I am so sorry that you are going through this! And I admire you for still
functioning through it...even if you think you are not...I will add you to
my prayers, Andrea.
Please call your doctor.
donnah

Andrea, we were talking about you while you were gone; all good stuff,
admiring you and where you live so much. I don't have RA or Fibro, only OA, so
I can't really help you at all.  But I do hope someone will come along with
good suggestions for you. You do see a Rheumatologist, don't you?
Gwen

-----------------------
Right is right, even if everyone is against it; and wrong is wrong, even if
everyone is for it.
-  William Penn

Andrea
You are a trooper. I dont have much advise but I do know with my OA I also
have a very bad time in the morning.
You really should take the time to go see your doctor  and dont get yourself
into a weakened state. He can surely give you something or advise you
something to help you.
I admire you so much for taking care of your 11 children. That alone is very
tiring.  Then having RA on top of it, I really  don t see how you manage.
God Bless you and I will also remember you in my prayers.
If you ever have the time , send us some pictures of the children to ooh and
ahh over,
your friend
janice

Hey!!!  How very exciting. I was telling my husband about you yesterday
because we were watching Full Circle with Michael Pailin on Bravo and
they were in New Zealand. I was telling him how beautiful your back yard
was. :) Love to see the pictures again if you have them handy
So what are you taking for your RA? Have you told your RD how bad your
mornings are? Someone on hear knows which drug pass through the breast
milk if that is an issue. For some reason, I think Enbrel fit that but
not sure. Let me check Google...

I knew it was out there somewhere. I then did Dr. Beer and Enbrel search
in Google and got two hits but didn't open them. I will let you do that
exploring.  
By age two, I could no longer lift my now 28 year old daughter. I could
get down to her then so that is what I would do. She would need an up
hug and I would get down and let her crawl into my lap. I don't remember
how I got through all that. It was before I was diagnosed. And I wasn't
nursing at the time. I was taking 14 aspirins a day when I finally got a
diagnosis. And no they did not hold through the night.
So sorry you are in such pain.
Duckie

welcome back, andrea.
it must be frightening to have so much responsibility for so many little lives
when you feel terrible. i hope your doctor can find a way to help you. it
sounds like there might be a little post partum depression creeping in just to
make matters worse.
please keep us posted. i don't know how you do all you do. my hands ached just
reading about it.

diane

I really don't think it is the sleep as much as it is staying still.  I'm always
stiff and sore when I have to drive an hour to go to the doctor.  Just that much time
motionless in the car and everything tightens up.

--
Jo Firey

"Life is not measured by the number of breaths we take, but by the moments that take
our breath away."

Welcome back Andrea,
Blame those pregnancy hormones that give women with RA a bit of
respite during the pregnanct, but run amok when it is over.

Have you spoken with your Rd? There must be something s/he can do to
help.

I am so sorry to hear that you are not doing well. It is interesting,
the questions you pose about why we feel worse after  resting or
sitting too long. I am not sure of the biological process, but it is
certainly difficult to get moving after resting. Getting up in the
night for feedings must be difficult as well.

I admire you. I know it can't be easy.
Rose

Hi Andrea-We wondered what had become of you.  Welcome back.

I have no answers for you, Sugar.  But I know you didnt really expect them.
But do, know that we know the kind of things that you are going through.

Taking care of a newborn and a toddler are exhausting anyway, but with an RA
flare going on at the same time, I have no idea how you manage at all.

Are you taking any medication?  If not, why not?  If so, what?  You need to
really start treating this stuff aggressively.  A steorid shot might help and
also a course of prednisone.  Also a DMARD is essential.

I suspect you are probably breat feeding that baby.  But she may have to go on
to a bottle, so that you can get some relief from your RA, so that you can take
care of her.

Please, keep us up to date on how things are going for you.  In the meantime,
welcome home.  Prayers being said for some relief of symptoms for you.
Char

"Remember, I'm pulling for ya'.
We're all in this together."  Red Green

(((((Andrea))))))

we do understand, both the feeling lousy and the feeling like you're moaning
all the time.  life just ain't fun that way!  

I think it's the lying still that makes you so much stiffer overnight.  While
any period of time will do that for me, I know that the more soundly I sleep,
the stiffer I am.  If I'm waking up all night long, I'm not nearly as stiff
in the morning.

and now that I think about it, RA is the body trying to heal itself, it's
just confused about what it's trying to heal.  The inflammation, pain and
stiffness all result from the immune system thinking for some reason hat it
should go after those joints.  so when the body is resting and trying to heal
itself, it's doing those things that are the symptoms of RA.  That's why so
many of us feel better arthritis-wise when we have a cold or the flu to
divert the immune system to something else.  Just ain't fair, is it?

have your docors tried any changes in your meds to help you out?

Hi Andrea:

First of all - consider yourself hugged very gently, your hair stroked, and
tears wiped. If there is anywhere where you are understood, it's here.

You don't know me cause I'm a newbie. While I'm still on the learning curve
for RA, I know breastfeeding and hand problems (and post partum depression).

Do you have splints/braces for your wrists? Pregnancy hormones exacerbate
carpal tunnel syndrome. RA exacerbates carpal tunnel syndrome. People tend
to sleep in positions which exacerbate carpal tunnel symptoms. It's not
exactly a win-win situation.
So if you have braces, please try to wear them more. No, You can't cup your
wrist to hold a newborn's head for latching on while wearing them. But once
Lydia is positioned and supported on a pillow, you can slip the braces back
on (you may need a footstool and to use crossed legs to help support the
pillows). The sling should help in that you can carry Lydia and have her
head supported without your wrists having to be tensed all the time. Your
wrists will need to do less work once she can fully support her own head and
back.

Not sure what medications you are taking, if you are taking any at all. You
can take up to 2400 mg of Ibuprofen in a 24 hour period without any
detectable amounts showing up breastmilk. Research on this was done in an
American hospital (Brigham and Womens, Boston, MA) around 1993 or 1994. You
can get information like that through La Leche League (LLL), an
international organization which supports breastfeeding mothers. Every
region of the Organization has a 'medical liaison.' That person has contacts
who have access to the data base of  abstracts and of any published medical
study. If there is a medication you are not taking because of it's
possibility of coming through your milk, check out the medication through
this channel. And you may be right. But maybe there is another which is OK.

You don't need to be a martyr, just a Mom. And many meds which will not be
OK while  Lydia is still a newborn may be OK as she grows and weighs more or
hits certain developmental milestones. Don't overlook the need for good
medication support.

Don't forget the value of icepacks which you can use while the Lydia is
nursing while lying on a pillow (or pillows) on your lap. In fact, a LLL
Leader might help you find combos of pillows to promote hands-free nursing.
It just helps to have someone looking from another angle to see where
support might be needed.

Are there any families in your area who homeschool who have a young teen who
might be a mother's helper (and can you afford that - or barter teaching
some skill while s/he is with you)? That could take some of the burden off,
too.

There is a thick toilet seat which attaches over (or instead of) the regular
seat. It is available in medical supply places. That would mean less far to
'fall' to use the
toilet. Not sure if that would help because of all the young children with
short legs. But if there is more than one toilet in the house, maybe that
would help.

Can bathing Lydia and her brother wait until older children are home from
school? Can an older child do the bathing under your supervision? Can your
husband take the toddler in with him when he showers? If not, Can you take
them both in the shower with you instead of a bath? Let the toddler play
with a soapy sponge while Lydia stays in a safety seat outside the tub and
you get cleaned up first. When you and your son are 'clean enough' quickly
undress Lydia, wash her up in the shower, and wrap her in a towel. Then you
dry and dress bather's from youngest to oldest. Just have a secure wrap for
yourself for after the bath. You may be in it a while. And it uses up part
of the day - time you don't have to think about keeping the toddler busy
while you care for yourself and Lydia.

Morning stiffness is a hallmark of RA. And it's hard to get and stay moving
enough to ward off stiffness when you have to sit so frequently and for so
long. There may not be a solution for that right away. Or for the flu-like
feeling. Maybe just time. Maybe finding a medication that's OK. Just stick
with it.

Please talk with your doctor. Talk to a LLL leader. Talk to community people
who may know someone who knows someone who would love to volunteer and help
hold Lydia all she wants, and read to the toddler, while you nap.

Be kind to yourself. It's the hardest thing for a mom, but please try.

Adelle

welcome back, andrea, and gentle ((((((((hugs))))))))).  you've gotten such
good advice already, there isn't much left for me to say.  raising children
can be difficult at times, but coupling that with RA's painful  symptoms
makes it all the more overwhelming.  my heart goes out to you.  i'm hoping
you can get to a rheumatologist who can help control your RA so that you
feel much better.  you are in my thoughts and prayers.
kate

Hi, I used to post here, if ever so briefly, about a year
ago. Then I became pregnant, life became busy, my computer
broke as well and I went mia.
For those who may remember me I am Andrea from New Zealand,
I 'had' 10 children and shared a link to their on line photo
album and some of you made some lovely comments about them
which made my day :-)
I now have 11 children, our latest baby Lydia is 8 weeks old
today, and the light of my life, but when she was 3 weeks I
went into full post partum flare, which is getting worse as
the weeks go on :-(
Which is what brings me to my moan. There aren't many
places, or people even, that understand what I'm going
through and how depressing this is to wake up every day in
such pain. I'm 34 and feel 90. I cry every morning just
getting out of bed, I can't bend my knees to sit on the
toilet even, I have to sort of fall on to it...and then
there's getting off. Caring for my baby is soooo hard, I
can't 'just' pick her up, my hands and wrists are so swollen
and sore it's agony, I have to scoop my hands under her and
hold her with my forearms. I have just bought a sling so
hopefully that will take the pressure of my hands. Dressing
her, bathing her (and her brother who is 21mths) takes
forever and is always accompanied by a river of tears from
me due to the pain. I just need to tell someone how much I
HATE this. I'm starting to feel like all I do is moan about
what hurts. Even my husband who tries to be sympathetic asks
me 'so what hurts today' like I'm a hypochondriac and I get
so depressed by it. I know he means well and is trying to
sound caring but it actually makes me feel like all I do is
moan. He must get sick of hearing me go on about the pain, I
know I'm sick of hearing myself.
And then there's the tiredness, and the chills and aches. I
feel like I've permanently got the flu, every muscle aches.
The anaemia is exhausting me. I also had an emergency
c/section with Lydia that was complicated and I bleed a lot
requiring 2 transfusions after she was born. My post
operative hb was only 60 and I've never really recovered
because of this active RA bringing it down all the time.
I'm just one sore grumpy mama and I hate being this way. I
hate being so grumpy :-( I didn't have children to growl at
them all the time, I hate being like this.
Well that's the intro and moan part over, now my question,
if any one knows the answer.
What is it about sleep that makes it all so worse? Why is it
so 'active' upon waking, why is the pain and stiffness worse
on waking? What is it about sleep that makes it go into
overdrive. Even if I only have about 3 hours sleep it has
the same effect. Sleep is a time when the body heals itself
and regenerates so why when you have RA does it start
attacking itself? Does anyone know the science behind it?

Thanks for reading this far, it was good to moan, thanks for
listening :-)

Take care

--
Andrea
Mum to...
Rhys (15) Jayden (13) Tessa (12)
Tyler (10) Paige (9) Grace (7)
Zachary (6) Rose (4 today!) Amelia (4 today!)
Seth (21 mths) and Lydia (8 weeks!)

((((((((((((Andrea))))))))))))

Bless you lady!!!!  I can't imagine the load you must carry with caring for
your children.  You can tell that you love them so much by your post.

I am sorry you are in so much pain.  I too wonder why it is worse in the
morning after resting.  What meds are you on?  It doesn't sound like you
have the RA under control.  There are many new meds out there that will help
stop the progression.  Have you talked with doc about this?  Enbrel, Humira,
Remicade are just a few of the newer ones.

I hope you get some relief soon!!!!!!!!!!   You deserve it.

debbie m.
www.angelfire.com/ga2/angels1/

Hi Andrea,
I just wanted to tell you I know exactly how you feel.  I have suffered with
RA for almost 20 years.  The worst emotional stress it put on me was when I
couldn't put my little girls hair in a pony tail.  I would do it anyway with
tears of pain.  She would say that's ok mommy, you don't have to.  I did have
to.  I wasn't going to let RA control my life.  My daughters are teenagers
now and they can fix their own hair, but I still suffer with the physical and
emotional pain.  My husband also gets frustrated with my moaning.  He blames
me for making the pain worse because I keep going.  Just tonight, I could
barely walk because of a flare in my ankle.  It was my daughters birthday,
and I had gone shopping for gifts and cake.  He said you can't expect to walk
around a store for hours when you can barely walk, so stop complaining.
People just don't understand that you have to keep going.  The pain is there
whether you go or not.  I often think if I had one wish, it would be for my
husband to feel the pain I have for just one day, so he would better
understand how I feel.  The aching, the fatigue, feeling like you have the
flu, and yes feeling like you are 90 years old.  It's worse in the mornings
because your joints stiffen while you sleep.  The inflammation is still there,
and the inactivity makes it worse.  And if your RA is like mine, it gets
better as the day goes on, but by the evening you are in so much pain, you
can barely move.  I am on an injection called Humira, and it is working!
When I first started taking it, I felt a big difference. I was so excited of
the possibility of living without pain.  Unfortunately, the RA is still there
and I still have flares, but they don't seem to be as severe.  It does help
to talk to someone who has the same feelings and understandings.  That is why,
I just had to respond to your posting.  It does get better, but you need a
Rheumatologist.  Because it is an autoimmune disease, what works for one may
not work for another.  Doctor's have to keep trying until they find a
combination of medication that works.  I can't tell you how many anti-
inflammatories I have had to try to get the one that provided the best relief.
This will not get better on it's own.  And if you don't take care of it, it
can cripple you.  I had my knee replaced because of damage.  I was only in my
30's.  I know how it feels to have to drop on the toliet because you can't
bend your knees.  You hope you aim right when you sit....and then you sit
there trying to figure out how you are going to get up.
Lots of luck to you.  You can respond to me anytime you want to moan.

Take care,
Lynn