RE: at last ---Hooray !

[Guest guest]

Hi ,

I'm SO HAPPY you have your first infusion scheduled! I had my first last

Tuesday, and have had about a 50% improvement in my symptoms. Since I was

feeling really horrible, I consider that a miracle! It has enabled me to do

so many things I otherwise would not be able to. Hopefully you and Wyatt

will have a dance party like and I did. Yes, I was able to dance! I

also went " boogie boarding " in the ocean. I could barely get to the store

to buy groceries a couple of weeks ago. Everybody takes a different amount

of time to have results, so don't be disappointed if you aren't dancing the

first week. And I never said I was dancing pain free. ;-) A word of

caution: I have used lousy judgment and have done too much too soon. I'm

back to being pretty sore. (Still not as bad as I was, though.) It's

tempting to go out and have a ball when you're feeling better, but

moderation is key.

I was told when they did the infusion that I could get results by 48 to 72

hours, but more likely after 2 weeks plus. They said after the third

infusion at week 6 I should have a response for sure if I'm going to have

one.

If you see your PCP again, you may want to ask about Trazodone for sleep if

you haven't discussed it as an option yet. It's an old antidepressant that

causes sedation, and using 50 mg per night I am sleeping like a baby. And

it has no addictive potential. Maybe the PCP would be more willing to

prescribe it.

You're such a sweet lady, , and I hope the Remicade is your miracle.

You deserve it, as does Wyatt! I think you sound like such a great Mom.

Love and hugs,

Carol

[Guest guest]

Carol,

You are so sweet to say such kind words. There are so many things that I can

hardly wait to do. The first of which is to do more things with Wyatt. We

went to s about 6 months ago and got many craft projects to do and I

have been so sick that we haven't done any of them. We got kits for

dreamcatchers and T-shirts and handprint stepping stones and a couple more.

Also I can't wait to get some of the housecleaning done. The things that I

have been putting off until I feel better. I don't remember what it feels

like to have some energy. Mine is taken up with dealing with the pain and

stiffness. I am hoping for good results like yours. I feel really bad for

Tess though. Just when you find some hope, you have an allergic reaction to

it. Isn't that our luck though? The last time I danced was at my sister's

wedding a year and a half ago. Wonder if I can still do it? I bet it would

be funny. I'm just going to keep bugging my pcp about the sleep prob.

Sooner or later she'll get tired of hearing it. I'm sure the problem is

related to the meds I am taking, namely the Prednisone. I can tell everytime

the dose is adjusted. My sleep patterns are also adjusted. I hope that you

continue to do well with the remicade. Just try to find that happy medium

between doing too much and not doing at all. The answer is out there, I'm

still looking for it too. Maybe its under that rainbow we keep chasing.

Love and Hugs

Stacey in PA