Re: Frustrated! Need to vent!

[Guest guest]

I am not sure if I am posting this right but i had to reach out to you! I am

older and donot have little ones any longer and cannot imagine having this darn

disease and trying to care for little ones to. I feel your frustration and i

hope venting helps even if its just a little! Bless your heart! I HATE this

PAIN! Your in my thoughts...Offers you a Hug through the internet!

Donna W.

________________________________

From: missiep78 <missiep78@...>

Sent: Mon, August 23, 2010 3:24:37 PM

Subject: [ ] Frustrated! Need to vent!

I know you guys will all understand. My husband feels horrible for me, but

doesn't know what its like having this crappy disease. I was pregnant and on

steriods for the entire pregnancy. Before the pregnancy I was just on 6

methotrexate pills. After, I was on 10 pills plus prednisone. The methotrexate

that I took on Friday would make me sick and tired all weekend. I would

literally not eat and just sleep the whole weekend. That was hard w/ a 2 and 4yr

old. So...I tried 10 pills of mtx w/ Enbrel and prednisone. Nothing. Now I'm

supposed to try my 2nd shot of Humira on Wednesday, and I still take my

prednisone. I swear that the only thing keeping me " going " is the prednisone.

It's like I have a window in the middle of the day where I can " function " . I am

useless first thing in the morning, and after about 7pm. It's hard when my kids

need me, and I can't do much w/ them, because I can't lift them, dress them or

bathe them well. Let alone some mornings where I can't do my hair, or I have to

get my husband to help me get dressed. It gets better, right?

[Guest guest]

oh my goodness hon, i do feel sooo sorry for you. i know how you feel,

as i feel the same. but.... i don't have the small kids to tend to.

you need some help.... no..., it doesn't get any better... God. i do

hate to tell you this. and i might be wrong, everyone is different.

you might get lucky, the dr. might come up with the right combination

of meds for you, that will be the magic drug for you. i just know i've

tried so many different kinds and nothing has worked for me, so far.

i'm on prednisone , plaquinil and pain meds right now. my dr. says he

has run out of options on me....lol.... BUT.... honey, i am 68 years

old. old enough to slow down anyway. i just wish i could..... my

husband expects me to keep on working everyday, and i have to , to

have a place to live. its a bad situation here . thats a long story,

but, if i don't work , i am no good to him...... so, i keep trying.

its so hard. if it wasn't for my pain meds i couldn't get out of bed

everyday. got to keep going , someway.

you are young, with the precious little ones. i'm sorry you are

missing out on a normal life. this is a hateful disease. it has no

respect for age..... i know of a little girl who walks with crutches

and braces, has had arthritis as long as i've known her. she's about

13 now.

the best thing you can do for yourself is get something for your

depression. it will destroy you hon. with pain, and depression, you

will live a miserable life, and you're way to young to do that.

take care, .... keep venting to the group.... some of us will

understand..... we all do.... we care....

betty

On 8/23/10, missiep78 <missiep78@...> wrote:

> I know you guys will all understand. My husband feels horrible for me, but

> doesn't know what its like having this crappy disease. I was pregnant and on

> steriods for the entire pregnancy. Before the pregnancy I was just on 6

> methotrexate pills. After, I was on 10 pills plus prednisone. The

> methotrexate that I took on Friday would make me sick and tired all weekend.

> I would literally not eat and just sleep the whole weekend. That was hard w/

> a 2 and 4yr old. So...I tried 10 pills of mtx w/ Enbrel and prednisone.

> Nothing. Now I'm supposed to try my 2nd shot of Humira on Wednesday, and I

> still take my prednisone. I swear that the only thing keeping me " going " is

> the prednisone. It's like I have a window in the middle of the day where I

> can " function " . I am useless first thing in the morning, and after about

> 7pm. It's hard when my kids need me, and I can't do much w/ them, because I

> can't lift them, dress them or bathe them well. Let alone some mornings

> where I can't do my hair, or I have to get my husband to help me get

> dressed. It gets better, right?

>

>

--

NUMBERS 6: 24-26

[Guest guest]

I feel for you and have been where you have been. For me it got better once I

got on the biologics, I couldn't do enbrel anymore after 2 years and went

without for almost a year while working with a 2 and 4 year old and a boyfriend

who was blind. I was sole support in the house financially and couldn't not

work. I managed through the bad days 1 day at a time. I finally got put on

Orencia which worked for 3 months and gave me some relief along with tramadol

which has been my god sent to help with pain management. Now I'm on remicade

and wouldn't change a thing about it, love it dearly and only have to get it

every 8 weeks. You may want to consider going on one of the IV biologics to

help you. my kids are now 5 and 7 and when they were 2 and 4 my oldest

understood mommy can't do everything and started helping me around the house. I

had her do the little things like pick up stuff off the floor because I couldn't

bend to get them. She also started to dress herself as well all I had to do was

pick out the clothes for her, I made it simple in clothing like tshirts and

jeans or shorts or skorts. I got them shoes that they didn't have to tie or I

had to tie as well which made it easier. as my son got older I was able to

incorparate the things that I had done with my daughter at 4 to him and he

started helping out as well, and I started giving my daughter more difficult

tasks to help with like clearing off the table and wiping it off. Its not easy

living with RA and raising kids and understand what you are going through. If

you ever need to talk privately please feel free to email me and I will try to

help and give you advice the best I can.

in land

________________________________

From: missiep78 <missiep78@...>

Sent: Mon, August 23, 2010 3:24:37 PM

Subject: [ ] Frustrated! Need to vent!

I know you guys will all understand. My husband feels horrible for me, but

doesn't know what its like having this crappy disease. I was pregnant and on

steriods for the entire pregnancy. Before the pregnancy I was just on 6

methotrexate pills. After, I was on 10 pills plus prednisone. The methotrexate

that I took on Friday would make me sick and tired all weekend. I would

literally not eat and just sleep the whole weekend. That was hard w/ a 2 and

4yr

old. So...I tried 10 pills of mtx w/ Enbrel and prednisone. Nothing. Now I'm

supposed to try my 2nd shot of Humira on Wednesday, and I still take my

prednisone. I swear that the only thing keeping me " going " is the prednisone.

It's like I have a window in the middle of the day where I can " function " . I

am

useless first thing in the morning, and after about 7pm. It's hard when my

kids

need me, and I can't do much w/ them, because I can't lift them, dress them or

bathe them well. Let alone some mornings where I can't do my hair, or I have

to

get my husband to help me get dressed. It gets better, right?

[Guest guest]

You know what though? As much as I hate this disease with a passion, I guess

it's the " best " auto-immune disease to have if I were to have one...

--- In , Mischievous Kitten <mischievouskitten@...>

wrote:

>

> I am not sure if I am posting this right but i had to reach out to you! I am

> older and donot have little ones any longer and cannot imagine having this

darn

> disease and trying to care for little ones to. I feel your frustration and i

> hope venting helps even if its just a little! Bless your heart! I HATE this

> PAIN! Your in my thoughts...Offers you a Hug through the internet!

>

> Donna W.

>

>

>

>

>

> ________________________________

> From: missiep78 <missiep78@...>

>

> Sent: Mon, August 23, 2010 3:24:37 PM

> Subject: [ ] Frustrated! Need to vent!

>

>

> I know you guys will all understand. My husband feels horrible for me, but

> doesn't know what its like having this crappy disease. I was pregnant and on

> steriods for the entire pregnancy. Before the pregnancy I was just on 6

> methotrexate pills. After, I was on 10 pills plus prednisone. The methotrexate

> that I took on Friday would make me sick and tired all weekend. I would

> literally not eat and just sleep the whole weekend. That was hard w/ a 2 and

4yr

> old. So...I tried 10 pills of mtx w/ Enbrel and prednisone. Nothing. Now I'm

> supposed to try my 2nd shot of Humira on Wednesday, and I still take my

> prednisone. I swear that the only thing keeping me " going " is the prednisone.

> It's like I have a window in the middle of the day where I can " function " . I

am

> useless first thing in the morning, and after about 7pm. It's hard when my

kids

> need me, and I can't do much w/ them, because I can't lift them, dress them or

> bathe them well. Let alone some mornings where I can't do my hair, or I have

to

> get my husband to help me get dressed. It gets better, right?

>

>

>

>

>

>

>

>

[Guest guest]

I have an appt. w/ my Dr. in a few weeks...hopefully we will figure something

out. I feel bad for ANYONE who has this, regardless of their age! I hope you

feel better soon too!

> > I know you guys will all understand. My husband feels horrible for me, but

> > doesn't know what its like having this crappy disease. I was pregnant and on

> > steriods for the entire pregnancy. Before the pregnancy I was just on 6

> > methotrexate pills. After, I was on 10 pills plus prednisone. The

> > methotrexate that I took on Friday would make me sick and tired all weekend.

> > I would literally not eat and just sleep the whole weekend. That was hard w/

> > a 2 and 4yr old. So...I tried 10 pills of mtx w/ Enbrel and prednisone.

> > Nothing. Now I'm supposed to try my 2nd shot of Humira on Wednesday, and I

> > still take my prednisone. I swear that the only thing keeping me " going " is

> > the prednisone. It's like I have a window in the middle of the day where I

> > can " function " . I am useless first thing in the morning, and after about

> > 7pm. It's hard when my kids need me, and I can't do much w/ them, because I

> > can't lift them, dress them or bathe them well. Let alone some mornings

> > where I can't do my hair, or I have to get my husband to help me get

> > dressed. It gets better, right?

> >

> >

>

>

> --

> NUMBERS 6: 24-26

>

[Guest guest]

Thanks for the advice. Maybe I'll ask about those at my next appt. I have good

kids, and they do understand. It doesn't help w/ the frustration though, as I'm

sure you know! It wouldn't be as bad if it stayed in one part of my body so that

I could get used to it. My shoulder is always bad, which is a pain...but you

never know what you are going to get on a daily basis, which makes it hard. I

know my family understands it, but I feel like sometimes they feel like I'm

making it up to get out of stuff sometimes?

>

> I feel for you and have been where you have been. For me it got better once I

got on the biologics, I couldn't do enbrel anymore after 2 years and went

without for almost a year while working with a 2 and 4 year old and a boyfriend

who was blind. I was sole support in the house financially and couldn't not

work. I managed through the bad days 1 day at a time. I finally got put on

Orencia which worked for 3 months and gave me some relief along with tramadol

which has been my god sent to help with pain management. Now I'm on remicade

and wouldn't change a thing about it, love it dearly and only have to get it

every 8 weeks. You may want to consider going on one of the IV biologics to

help you. my kids are now 5 and 7 and when they were 2 and 4 my oldest

understood mommy can't do everything and started helping me around the house. I

had her do the little things like pick up stuff off the floor because I couldn't

bend to get them. She also started to dress herself as well all I had to do was

pick out the clothes for her, I made it simple in clothing like tshirts and

jeans or shorts or skorts. I got them shoes that they didn't have to tie or I

had to tie as well which made it easier. as my son got older I was able to

incorparate the things that I had done with my daughter at 4 to him and he

started helping out as well, and I started giving my daughter more difficult

tasks to help with like clearing off the table and wiping it off. Its not easy

living with RA and raising kids and understand what you are going through. If

you ever need to talk privately please feel free to email me and I will try to

help and give you advice the best I can.

>

> in land

>

>

> ________________________________

> From: missiep78 <missiep78@...>

>

> Sent: Mon, August 23, 2010 3:24:37 PM

> Subject: [ ] Frustrated! Need to vent!

>

> I know you guys will all understand. My husband feels horrible for me, but

> doesn't know what its like having this crappy disease. I was pregnant and on

> steriods for the entire pregnancy. Before the pregnancy I was just on 6

> methotrexate pills. After, I was on 10 pills plus prednisone. The

methotrexate

> that I took on Friday would make me sick and tired all weekend. I would

> literally not eat and just sleep the whole weekend. That was hard w/ a 2 and

4yr

> old. So...I tried 10 pills of mtx w/ Enbrel and prednisone. Nothing. Now I'm

> supposed to try my 2nd shot of Humira on Wednesday, and I still take my

> prednisone. I swear that the only thing keeping me " going " is the

prednisone.

> It's like I have a window in the middle of the day where I can " function " . I

am

> useless first thing in the morning, and after about 7pm. It's hard when my

kids

> need me, and I can't do much w/ them, because I can't lift them, dress them

or

> bathe them well. Let alone some mornings where I can't do my hair, or I have

to

> get my husband to help me get dressed. It gets better, right?

>

>

[Guest guest]

It is hard with small children and does get better as they age. My daughter is

very good about helping, but sometimes she grumbles when she has to interrupt

her activities to help me. The hardest is if I have to cancel our plans at the

last minute. She and my husband just don't understand how quickly my condition

can change.

Pam

>

> I know you guys will all understand. My husband feels horrible for me, but

doesn't know what its like having this crappy disease. I was pregnant and on

steriods for the entire pregnancy. Before the pregnancy I was just on 6

methotrexate pills. After, I was on 10 pills plus prednisone. The methotrexate

that I took on Friday would make me sick and tired all weekend. I would

literally not eat and just sleep the whole weekend. That was hard w/ a 2 and 4yr

old. So...I tried 10 pills of mtx w/ Enbrel and prednisone. Nothing. Now I'm

supposed to try my 2nd shot of Humira on Wednesday, and I still take my

prednisone. I swear that the only thing keeping me " going " is the prednisone.

It's like I have a window in the middle of the day where I can " function " . I am

useless first thing in the morning, and after about 7pm. It's hard when my kids

need me, and I can't do much w/ them, because I can't lift them, dress them or

bathe them well. Let alone some mornings where I can't do my hair, or I have to

get my husband to help me get dressed. It gets better, right?

>

[Guest guest]

Seriously????

> >

> > I feel for you and have been where you have been. For me it got better

once I got on the biologics, I couldn't do enbrel anymore after 2 years and went

without for almost a year while working with a 2 and 4 year old and a boyfriend

who was blind. I was sole support in the house financially and couldn't not

work. I managed through the bad days 1 day at a time. I finally got put on

Orencia which worked for 3 months and gave me some relief along with tramadol

which has been my god sent to help with pain management. Now I'm on remicade and

wouldn't change a thing about it, love it dearly and only have to get it every 8

weeks. You may want to consider going on one of the IV biologics to help you. my

kids are now 5 and 7 and when they were 2 and 4 my oldest understood mommy can't

do everything and started helping me around the house. I had her do the little

things like pick up stuff off the floor because I couldn't bend to get them. She

also started to dress herself as well all I had to do was pick out the clothes

for her, I made it simple in clothing like tshirts and jeans or shorts or

skorts. I got them shoes that they didn't have to tie or I had to tie as well

which made it easier. as my son got older I was able to incorparate the things

that I had done with my daughter at 4 to him and he started helping out as well,

and I started giving my daughter more difficult tasks to help with like clearing

off the table and wiping it off. Its not easy living with RA and raising kids

and understand what you are going through. If you ever need to talk privately

please feel free to email me and I will try to help and give you advice the best

I can.

> >

> > in land

> >

> >

> > ________________________________

> > From: missiep78 <missiep78@>

> >

> > Sent: Mon, August 23, 2010 3:24:37 PM

> > Subject: [ ] Frustrated! Need to vent!

> >

> > I know you guys will all understand. My husband feels horrible for me, but

> > doesn't know what its like having this crappy disease. I was pregnant and

on

> > steriods for the entire pregnancy. Before the pregnancy I was just on 6

> > methotrexate pills. After, I was on 10 pills plus prednisone. The

methotrexate

> > that I took on Friday would make me sick and tired all weekend. I would

> > literally not eat and just sleep the whole weekend. That was hard w/ a 2

and 4yr

> > old. So...I tried 10 pills of mtx w/ Enbrel and prednisone. Nothing. Now

I'm

> > supposed to try my 2nd shot of Humira on Wednesday, and I still take my

> > prednisone. I swear that the only thing keeping me " going " is the

prednisone.

> > It's like I have a window in the middle of the day where I can " function " .

I am

> > useless first thing in the morning, and after about 7pm. It's hard when my

kids

> > need me, and I can't do much w/ them, because I can't lift them, dress

them or

> > bathe them well. Let alone some mornings where I can't do my hair, or I

have to

> > get my husband to help me get dressed. It gets better, right?

> >

> >

[Guest guest]

that makes me so mad. as hard as i worked to raise my four kids on my own, with

RA, i cannot imagine someone saying something like that about her child. I think

you will find lots of " RA Moms " here in this group. ((hug))

> >

> > I feel for you and have been where you have been. For me it got better

once I got on the biologics, I couldn't do enbrel anymore after 2 years and went

without for almost a year while working with a 2 and 4 year old and a boyfriend

who was blind. I was sole support in the house financially and couldn't not

work. I managed through the bad days 1 day at a time. I finally got put on

Orencia which worked for 3 months and gave me some relief along with tramadol

which has been my god sent to help with pain management. Now I'm on remicade and

wouldn't change a thing about it, love it dearly and only have to get it every 8

weeks. You may want to consider going on one of the IV biologics to help you. my

kids are now 5 and 7 and when they were 2 and 4 my oldest understood mommy can't

do everything and started helping me around the house. I had her do the little

things like pick up stuff off the floor because I couldn't bend to get them. She

also started to dress herself as well all I had to do was pick out the clothes

for her, I made it simple in clothing like tshirts and jeans or shorts or

skorts. I got them shoes that they didn't have to tie or I had to tie as well

which made it easier. as my son got older I was able to incorparate the things

that I had done with my daughter at 4 to him and he started helping out as well,

and I started giving my daughter more difficult tasks to help with like clearing

off the table and wiping it off. Its not easy living with RA and raising kids

and understand what you are going through. If you ever need to talk privately

please feel free to email me and I will try to help and give you advice the best

I can.

> >

> > in land

> >

> >

> > ________________________________

> > From: missiep78 <missiep78@>

> >

> > Sent: Mon, August 23, 2010 3:24:37 PM

> > Subject: [ ] Frustrated! Need to vent!

> >

> > I know you guys will all understand. My husband feels horrible for me, but

> > doesn't know what its like having this crappy disease. I was pregnant and

on

> > steriods for the entire pregnancy. Before the pregnancy I was just on 6

> > methotrexate pills. After, I was on 10 pills plus prednisone. The

methotrexate

> > that I took on Friday would make me sick and tired all weekend. I would

> > literally not eat and just sleep the whole weekend. That was hard w/ a 2

and 4yr

> > old. So...I tried 10 pills of mtx w/ Enbrel and prednisone. Nothing. Now

I'm

> > supposed to try my 2nd shot of Humira on Wednesday, and I still take my

> > prednisone. I swear that the only thing keeping me " going " is the

prednisone.

> > It's like I have a window in the middle of the day where I can " function " .

I am

> > useless first thing in the morning, and after about 7pm. It's hard when my

kids

> > need me, and I can't do much w/ them, because I can't lift them, dress

them or

> > bathe them well. Let alone some mornings where I can't do my hair, or I

have to

> > get my husband to help me get dressed. It gets better, right?

> >

> >

[Guest guest]

Grrrrr :

What a thing to say!!!

You should tell your mama " Well Mom, with all due respect, being a good mother

that I AM, and being the kind of mother that I AM, I would pile all four of my

kids on my back and carry them and help them if they had a diagnosis like RA,

not terminate one of them, but then again, thats the kind of person I AM, maybe

you should put yourself in check "

But thats just me - L0L:))

RA Mom of Three, hang in there lady!!

OKD

[Guest guest]

>

> It's hard when my kids need me, and I can't do much w/ them, because I can't

lift them, dress them or bathe them well. Let alone some mornings where I can't

do my hair, or I have to get my husband to help me get dressed. It gets better,

right?

>

I am right there with you, I have a 4 yr old and 8 yr old. I was out of town

last week and came home to 2 grubby kids - did they not take a bath for a week?

But I was too tired to get them into the bathtub last night. So I sent two

grubby kids to school this morning (figured they went to school like that last

week, so the teachers won't be seeing anything new). My 8 yr old had not had her

hair brushed for a week (she isn't good at brushing it herself, it is long and

gets tangled), her fingernails were black with dirt. I'm wondering if social

services is going to call, but at least I got her hair brushed this morning.

EJ