Kim

[Guest guest]

No Kim, don't go spending your money on us, you take care of your little

one, we are on the same treck here, and yes, God will provide. Bless you

for the offer, the offer is enough, but if you have ten bucks you want to

blow, go get that baby of yours a special toy to make up for the misery

she's having to live through right now.

s.

Re: Kim

> From: Pinkyz97@...

>

> Ok, ee, now you've got me crying. Sounds like you're bringing about

> what I did as far as comforts for the little one. Do you have a date yet

as

> to when you'll be arriving? They've got a lot of dry and canned foods in

the

> pantry that are for anyone to eat. I didn't notice any tabasco sauce,

> though. Wow! My daughter can eat hot stuff, too. Amazing, isn't it?

How

> about diapers? What size does wear? I can get you a pack of

diapers

> and some wipes if that will help. Less luggage for you to cart with you.

We

> filled in my suitcase with diapers for ...it was fun unpacking

> them...they were everywhere! lol

>

> God will provide. Your family is in my prayers. I know how stressing all

of

> that can be.

>

> Kim

>

> ---------------------------

[Guest guest]

Glad you're home. Part of your problem may be they are tapering the

prednisone too quickly. There were times initially when I was on high

dose prednisone and when the doctors lowered the dosage too fast the

sarc went into overdrive. The doctors in Ann Arbor have a firm policy

now if a patient is on over 60 mg of prednisone a day for more than 3

weeks then when they start tapering dosage they only reduce it by 2

mg per week. Several times I ended up in the hospital because they

tried to reduce the prednisone too fast. Take yourself back up to the

80 mg dosage and see if things start settling down again. If it does

then start a slower taper. My doctors order my prednisone in 20 mg,

10 mg, 5 mg and 1 mg tablets. So that way when we can try tapering we

can do it slowly and not cause any other problems. Currently Im on 95

mg along with the methotrexate and all the other goodies, but the

good news is that as soon as the insurance company processes the

paperwork to start the Remicade treatment, they are going to start

tapering the prednisone. And something to remember is that while the

side effects from the prednisone can sometimes feel almost

unbearable, the things that untreated sarc can be doing to your body

and you are unaware of them until you end up in the hospital are

truly not what you want to worry about. Prednisone is a nasty drug

and does cause great havoc in your body, but a friend of mine who had

sarc decided she couldnt deal with the side effects and just stopped

taking the prednisone or any other drugs. Everything appeared to be

going well for almost six years. But during that time the sarc was

damaging her lungs, her heart, her kidneys, her liver, her brain.

There wasnt anything slowing it down or inhibiting its progress. By

the time she felt so sick she couldnt help but go back to the doctors

again it was too late for any of the medications to work. There was

no reversing all the damage that was done. And her heart just finally

stopped. We dont HAVE to die from this disease. It can make our lives

miserable. It can force us to make great adjustments in our living

styles and make life difficult not only for us, but for those around

us. There are medications out there that can arrest the dragon for

some, slow the progress for others. AND there is always something new

to try. The greatest thing is to say to yourself " Yeah today life

sucks, but tomorrow might be better. So maybe if I try this or try

that I can make some progress. " Sometimes its very, very hard to

hope. And sometimes it would be very, very easy just to call it a day

and say I've fought the good fight and I deserve my rest. But there

is always tomorrow and no one knows what tomorrow will bring.

shar