Courttneey

July 3, 2006

My Rheumy said that you need to give Enbrel at least 3-4 months to

see if it is going to work for you. It took 4 weeks for me to see a

difference other than the fact that I felt more alert after the

first injection. 4 weeks though before I was able to stop walking

like I had a corn cob stuck up my butt. If it does not work for you

then on to the next one kid. Try another one. Your Rheumy will know

what to try next. We are all different. I take Plaquienl too but it

did not work one bit until after 3 and a half months. It's hard to

take something when we see no results at first. Now about the crappy

Mom thing. We have to work on that one and I am one you might want

to listen to in that area. If I can over come that issue, ANY one

can. My daughter has (ok...MOST of you have heard this HOW MANY

TIMES??? lol...I imagining you all saying this in unison now) high

functioning autism, Obsessive Compulsive Disorder, and Mood Disorder

(childhood Manic Depression). There are others on the site who have

special needs kids too. You will be a different type of Mom to your

10 year old, not worse...just different. You will be able to teach

him life lessons like how to cope and how to smile even when you

don't FEEL like smiling and how to treat others well even when you

feel like something the dogs dragged up and the cats wouldn't have.

You got to be a typical Mom to your older kids. Now you get to be an

extrordinary Mom to this younger child. But Honey....only if you

want to be. This is your call. I felt just like you but I have so

much I HAVE to do each day to help be able to function that I

did not have time to give in. But in my heart, I felt horrible that

I could not run with her and that I was always saying " Be gentle

with Mom....my body hurts " . She can't read facial expressions well

so I had to ask her what we could do that would help her know when

Mom was having a bad day with my bones. She came up with a picture

that she drew of a face in pain and I would wear it on a chain

around my neck on bad days. That was most of thet time before my

Enbrel kicked in a week or so ago. has to do things

differently because of her disabilities. Suddenly I was having to do

things differently too. When we played ball, EVERYone had to walk

instead of run since I could not run. It was hysterical and before

long we were all laying in the grass laughing our tails off. Because

we decided that we had a choice. We could be all pissed off that we

had to do it another way or we could find a sick way to laugh about

it. I chose the laughter. It would hurt when I walked and it would

hurt when I sat. I chose to hurt walking. Sometimes depression comes

along with PA. If that's the case and you can't muster up the

strength to make the better choice then you can talk to your Rheumy

about it and he/she can prescribe an antidepresant medication to

clear that up so that you can do what you need to do. Your 10 year

old is blessed....he gets to see the real you. Seeing you strong and

determined to do what you have to do in order to be there for him

will be something he can carry with him all of his life. He will

actually feel he can depend on you more than the older two because

he will see you over come. He will know that you can handle

anything. You've got to think this through to the end and see the

big picture. He will only feel cheated if you feel cheated. He will

learn to feel the way you do. And if he is taught to feel that way,

how will he get through the troubles that will come his way someday?

This is your chance to implant strength into this young man. Now

sick em tiger! You've already taken the first step. You spilled your

guts. Now you've just got to shove em back in and be the Mom you

were meant to be. I'm here if you need me and so are many others. -

Betz

(Editor's Note: Betz, you are so amazing. The only bad mom is the mom who thinks

the universe revolves around her instead of around her children. As long as a

mother helps her child to believe he or she is the most wonderful, brilliant and

beautiful child in the universe, it doesn't matter if the mom can run a marathon

or is confined to a wheelchair. As longas the child feels more important than

the disease, that's all that matters to a kid. Kathy F. )

July 3, 2006

Now, I don't know much about the enbrel thing, because I am unable to

take it. But the crappy " mom " or parent, I can give you a few words...

I'm 36, my daughters are 12 and 13... They are so wonderful. But I have

agonized over the years, as the PA first then the amputations, would

make me a terrible parent. Would my children be disappointed in me?

Would they be unhappy because their friends parents went to all their

events, schools and sports... My biggest worry was would they be

embarrassed to bring their friends around... I even gave them the

opportunity for me to shut myself in the room when their friends come

over...

But the darnedest thing happened... They adapted... to me! They didn't

have a problem with any of it. They decided that is who I was, and they

loved me anyway... We make the best of what we can... We all sit down

together and watch movies together, because it's something we can do as

a family. That's what we focus on... Family... I believe if you just

let them know you are still " MOM " and they can still talk to you, and

you love them just as much as always, they will adapt to you. If

nothing else, always ask how they are doing, how their day was, and

above all, " What would you like to do together... " Just make the

effort, no matter how simple the game or mundane the trip... They will

love you for making the effort...

Just my two cents worth...

michael

P.S. Those same daughters have set me up a BLOG, " The ThorDinkin Guru "

Named after their favorite aunt's dog, Thor... When I get it going I'll

tell ya'll where to park yourselves for a while...

>

> My Rheumy said that you need to give Enbrel at least 3-4 months to

> see if it is going to work for you. It took 4 weeks for me to see a

July 4, 2006

,

Your post gives me a lot of hope. When my ex-wife and I were together about 2

years we started trying to have children, but it just didn't happen. Then she

got cancer, and we needed to wait. Once her cancer was gone, and it was coming

time to try again, she tried to tell me she didn't think she wanted to have kids

because she felt like I would be unable to take care of them and she would have

to do all the work because I'm in pain so much of the time. I tried with all my

might to tell her she was wrong, but she would not budge. Eventually I ended up

telling her to stop blaming it on me...if SHE didn't want kids she should own up

to it. She finally did own up to it, but not before she had done the damage a

few times by telling me it was all about my limitations...of course the same

reason she used for leaving me.

This is a great thing about kids. They love you for who and how you are. Their

only expectation is that you love and take care of them. I don't know that I'll

ever end up having them...I'm 38 and I don't know the future, but your story is

great.

Jayson

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