Re: Kirsten

[Guest guest]

Hi Kirsten,

I'm not a mom of a three year old but a grandmother of one. I know what you mean

about the

bribery! On my bad days, it is really hard to see to all of her needs. What I

feel the worst about

is not being able to walk and run with her and allow her to be outside and more

physically active

(not that she needs to be!). At least she goes to kids day out twice a week so

she gets to

interact with other children. We read a lot and watch movies when I have to

rest. I do have my 17

and 14 year old children that help me. They don't really listen when I tell them

that I am feeling

bad and in a lot of pain because they hear it so often. I don't think that

anyone who doesn't

suffer from these diseases fully understands. I hope that you have some family

to help you out.

Remember that they can't help you, if you don't tell them what you need.

I'm sorry that your hopes didn't work out for the trial meds. I also am on MTX

but had to lower

the dosage due to liver function. I took Bextra for a long time until I lost my

insurance.

Fortunately, MTX is not very expensive. I didn't think that the MTX was working

until I stopped

for a while, and then I found out how effective it was by the increase in pain.

I think that the hardest part is learning to pace yourself by saying NO when you

have too much on

your plate. I wish I could help you with some answers but I feel that everyone

has to find what

works for them and sometimes that is a long process. Take care of yourself and

your little

darling. Iris

-- kirst30 <kirst30@...> wrote:

> Hi there. I was dx with RA at the age of 27 and have been living with

> it for 8 years now--hard to believe! I was in remission for 2 years

> thanks to Enbrel but docs had to take me off of it when I was dx with

> MS in 2002. Slowly the RA came back and now it has taken over. I

> can't go on any of the newer drugs like Remicade, Humira, Enbrel due

> the MS (these drugs can cause MS to worsen). I was so thrilled to

> become part of a clinical trial at Northwestern in Chicago for

> Rituxan (approved lymphoma drug that can help RA). However I think

> I'm part of the placebo group because I've gotten worse not better!

> How frustrating. Thankfully at week 17 of study I can find out what

> I'm on and request the Rituxan (in July).

> My hands and feet are affected the worse right now. Have very limited

> movement in shoulder (no cartilage left but too young for shoulder

> replacement). My hands are so bad in the morning and I have a two

> year old to run around after! He is 36 pounds so very hard to pick

> up. Especially when he has temper tantrums about leaving the park and

> goes flat out on the ground and kicks and screams if I pick him up--

> AHHHHH!!!! Today I resorted to jelly beans to get him in the car--I

> vowed I wouldn't bribe my children (but that was we didn't have

> kids). WHat did I know??? He really is a sweetheart and kisses my

> hands when I tell them they hurt :-)

> i'm currently taking MTX, Celebrex and received infusion of trial

> drug a month ago (but probably placebo).

> Any other moms of toddlers with RA out there?? I could use some words

> of encouragement

> Thanks

> Kirsten in Chicagoland

>

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