OT: Thoughts for S.

[Guest guest]

,

First of all, Congratulations on the new baby boy! What a joy and blessing. My

daughter is expecting identical twin boys sometime between now and Sept 7th.

Hopefully they don't decide to show up too early.

Second of all, you absolutely MUST take care of YOU. Call your doctor. There are

medications you can take while nursing. I prefer to take nothing myself, but

like you... had to weigh the benefits and the risks. When you have a baby when

you have Stills, it's not totally uncommon for the fluxuation in hormones to

bring on a flare. YOU didn't DO ANYTHING to make this happen. Remember that.

I learned when my Father in Law was in the hospital after his heart surgery that

pain absolutely MUST be controlled, a fact that many of us don't fully

appreciate. IF you are in pain, your body spends all it's time fighting the pain

and NO time fighting the disease or fighting to get you better. Pain MUST be

managed if you are to feel better. That does NOT mean you have to be " wigged

out " on drugs though. Steroids, DMARDs and NSAIDs are not narcotic type pain

meds but DO manage the causes of the pain. While you are working on a drug

combination that is safe for the baby and works for you, you may also need some

pain meds to take the edge off. Tylenol works for me but then again, I'm a pain

wimp and am on hefty doses of the others. Stronger pain meds drop my blood sugar

to dangerously low levels so I have a hard time with those anyway.

Breastfeeding: I highly reccommend it BUT there are times when it just CAN'T be

done for one reason or another. The baby has had 2 months already so you have

done the good mom thing and given him a healthy start. Don't feel guilty that

you have a condition that requires you to spend some time taking care of you

too. Remember that the baby only knows you the way you are. He never knew you

before your limitations and won't expect you to be any different than the way

you are. He loves you just the way you are. Frustration is a side effect of any

disease and also from fatigue. Don't be too hard on yourself. Speak with your

doctor. Don't neglect your own health or the baby really will suffer. Breast

feeding is exhausting work. I know. I did it with each of my 3 children.

Stills Disease is exhausting too. Sometimes, our health requires that we

eliminate as many things that drain our energy as possible so we can get better.

I have had many months where I only wore a light shirt and light sweats. I

didn't have the energy to even carry around a pair of socks on my feet. You do

what you have to do. Bottle fed babies are no less loved if you have to do that.

My daughter wanted to breast feed her children but with her daughter, she had a

massive infection from her emergency C section (some stitches got infected) at 6

weeks. She had to return to work at 8 weeks. At 4 months, her husband had a

massive stroke. Through it all, she tried to keep up the breast feeding and I

finally told her she was being rediculous. It was just WAY too much for her to

try to keep up with. Bottle feeding allowed us Grandma's to lend a hand and let

her rest more. We loved it and still do. The babies benefited too, by spending

time with people who were not overtired and stressed out. Now Amber is in her

second pregnancy and she desperately wanted to nurse this baby and was hoping to

have a less stressful post partum time. Then we found out she is carrying twins.

All of us are doing our best to help her have a successful nursing experience

but most likely, it too will be short lived. If you have done your best, the

best you can do is the most anyone can ask of

you, including your own demands on yourself. Hopefully, by sharing my

daughter's experience, you will see that you are not alone in facing trials with

nursing as long as you had hoped.

Do you have family nearby? Your husbands family? Close friends? Can you hire a

" nanny " type person to assist you for a couple of hours a week? Call the La

Letche League. See if they can offer ideas. When I belonged to the group, there

were several of us moms who would take turns helping out women such as yourself.

It may sound crazy but we would care for nursing infants for a morning, an

afternoon, or a whole day so other moms could go to doctors, get rest from

illnesses and so forth. We would breast feed their child the same as our own.

The mom getting " relieved " for a day or a couple of hours may have to express

and freeze the milk for their child for a later time but it was a welcome break.

I knew all the moms personally that I " shared " my child with or I don't think I

would have done it but it is an idea to think about. Expressing while you nurse

and making bottles for later so hubbie can feed the child while you sleep is

also an option. I used to feel like a cow when my son

was nursing. I had so much milk, I donated 2 - 4 dozen bottles filled to 2 or 3

oz of " extra " milk every week. Hospitals take donated milk for preemies. Maybe

they can help you find a nursing mom who is sanitary and able to help you

occasionally. Sounds really wierd but once I began donation of breast milk to

the hospital to help other preemie babies that were not mine, the idea sounded

less strange to me too.

You will NOT fail your child. The very fact that you are worried about that in

the first place shows what a good mom you are. Unless you for a fact decided to

go out and get Stills disease, which is of course, impossible... there is

nothing you are doing to bring on a flare. They come and go as they please. Some

come and stay forever like mine, some come once and disappear, come come in

cycles. Do your best during a flare and then appreciate the good times but know

another flare might be right around the corner. Sort of makes time more precious

to me.

As for your husband, ask him what he needs to help him cope with his life right

now. Sometimes we think they are struggling much worse than they think they are.

Maybe if you work in shifts instead of both of you going nonstop all the time,

you BOTH will feel more refreshed. IF he works, maybe you take the night shifts

so he can sleep on the nights he works in the morning and he can let you sleep

on the nights he does not work in the morning. Maybe he can let you sleep in the

evening and feed your son one of the bottles you expressed for that purpose

during the day so you can rest. Both of you need to be getting at least 7 or 8

hours of sleep every 24 and my doctor said it does not have to be all in one

stretch. Nap when the baby naps. Clean house during his wake times, toss in a

load of laundry just after he went to sleep and then nap. Dry it when he gets

up. Use the crock pot for dinners. Vacuum one room instead of the whole house.

Sometimes, just changing how we do things can make

a world of difference. As you can tell, my brain just does not stop coming up

with ideas.

Bottom line, know this is all temporary. Your child will not always be nursing.

You won't always be in a flare. Life won't always be so hard. Take time to

appreciate the good things you have, like each other. Smile. You will feel so

much better if you can find a laugh or two at the rediculousness of your

situation. LOL And last but certainly not least, you always have US. WE will

help you though anything cause we love ya.

Smiles,

Caroline

Empress of CUS

sullivan wrote:

Now - for the last 3 days - I have had such intense pain - I can barely

move.

I am so very frustrated - I just don't know what to do. And - I don't wantto

start back on the drugs since I am breast feeding.

flare ups come every 6 months.

my dad feels it must be something I'm doing wrong or different.

I feel I am failing my child

And - my husband - is also sleep deprived and feeling very

helpless. Not only does he now have to take care of the baby, but also me!

If anyone does have any advice I would so appreciate it!

Thank you!

Sullivan

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.

---------------------------------