Miriam

[Guest guest]

Hi Kathe,

> Welcome to our family - this is a wonderful place to

> come for support and information.

Yes, I can see that already.

> You have a very full plate with full time work both at

> home and out of the home - seven kids! wow, I have two

> and that's sometimes more than I can manage lol. My

> kids have also had to pick up a bit more around the

> house since I was diagnosed with RA, but remember that

> your kids live in the house too and housework does not

> have to fall on your shoulders alone, especially with

> your also having a full time job during the week. Is

> there any way you can cut back on your job hours?

My husband is home full time with the kids and has been doing the

cooking and cleaning and laundry and dr. appts etc...Since I am the

sole income, there is no way I can afford to cut back my hours. My

husband and I decided about a year ago that he needed to stop working

and stay home to cut down on our stress and aggravation with

babysitters and the condition the house was always in. I make much

more than he did and I carry all the insurance benefits. However,

when we made this decision, I wasn't in so much pain all the time.

My kids are all responsible for doing chores and my oldest 12 are a

huge help but I still feel useless because I used to help out to and

just don't have the energy to do anything these days!

> It's hard to get people who don't have personal

> experience with these diseases to understand what they

> do to us. We may look " normal " but be in great pain

> and be very fatigued - I have gotten those type of

> " I'm tired too " and " I have arthritis too " comments.

> It's frustrating to try to explain RA when I am still

> finding out things about it lol.

Yes, it is frustrating. My 16 year old also started having pain at

13 and has missed a ton of school this year as her pain has never

been so bad. She is diagnosed with rheumatism (nothing specific) and

takes muscle relaxers every day (skelaxin) to keep her from cramping

up. It affects her arms, legs and back. I hate to see her like this

but when she isn't in excruciating pain, she has no pain at all and

functions fine. Her bad days are really bad and her good days are

great.

Has your husband

> gone to any of your doctor appointments? How old are

> your kids?

Yes, my husband does go with me and he is VERY supportive. I think I

am the one that is always feeling guilty but he doesn't put it on

me. My kids are 16, 14, 11, 9, 9 and 6. I have a 16 year old foster

daughter that is 38 weeks pregnant and my 6 year old adopted son has

cerebral palsy and is autistic. I think my kids do understand but it

is very hard for the younger ones especially to see mom always so

tired and in bed or in so much pain that when they get close to me I

have to say " don't touch " , give me a gentle hug or something similar.

> Hope this all helps - let us know how you are doing -

Thank you, I really appreciate that.

Miriam

[Guest guest]

Dang it! I do that _every_ time. I told Christie .org was a bad idea. <g>

www.vastnetwork.org

Miriam

Hi Miriam,

I couldn't find the info you talked about . the web addy you listed was www

vastnetwork.com. there's nothing there. could it be a different addy?

Thanks,

Debbie

[Guest guest]

That just really sucks. No other way to say it. I am so sorry to hear of

your diagnosis, but I hope that your MGB will give you the strength and

willingness to fight like a demon to meet this challenge as well. Know that

you are in our thoughts and prayers as you go through the next part of your

journey. Please keep us posted on how you are doing.

V

[Guest guest]

MIRIAM HERE GUYS,

REALLY APPRECIATE YOUR SUPPORT AND PRAYERS. I WILL BE GOING FOR SURGERY ON

THURSDAY FOR THE COLON.

THANK YOU ALL,

I KNEW I WOULD FIND SO MUCH SUPPORT FROM MY MGB FAMILY.

[Guest guest]

May you have all the blessings in the world on your surgery day and

as you heal. Many, many good thoughts coming your way!

in GA

>

> MIRIAM HERE GUYS,

>

> REALLY APPRECIATE YOUR SUPPORT AND PRAYERS. I WILL BE GOING FOR

SURGERY ON THURSDAY FOR THE COLON.

>

> THANK YOU ALL,

> I KNEW I WOULD FIND SO MUCH SUPPORT FROM MY MGB FAMILY.

[Guest guest]

> My name is Miriam and I have severe RA that just keeps getting

> worse. I am 40 years old and at times, I feel like my life is

> over. I sit home all day every day and alternate between laying in

> bed watching TV and sitting in the living room watching TV. I

> generally have Dr. appointments 2-3 days a week and go for aquatic

> therapy 3x a week. Other than this, I don't leave my house!

Hi Miriam,

I'm sorry to hear your RA is so bad I agree, maybe your rh

could start trying some other meds?

I get the same feelings of " there has to be more to life than

this " altho my dx is fairly recent so I haven't figured out

exactly what that is yet

I spend a fair amount of time in bed now, and my kids (and their

friends!) are now used to coming in and talking to me and maybe

watching TV (I got a small TV with a DVD player for just that

purpose.) Much as I hate this disease, I do think it forced me

to stop moving and working so much so now, in theory, I spend

more time with them which is good.

And I agree with Ardy about getting the kids to be more responsible.

Mine are 14 and 15 now, tho, and they're just learning, so it's hard.

I never expected all that much out of them when they were younger and

they balk (and moan and complain) at the fact that they are responsible

for keeping the kitchen and living room clean. But they're getting

there.

I do hope you can get some relief soon...