Re: I feel alone

[Guest guest]

Hi Kolleen,

I'm sorry for your diagnosis. I kind of had the same experience. A

nurse in my dr's office told me over the phone " Yep, you have RA,

we're referring you to a rheumatologist. " It's kind of a harsh way to

get the diagnosis. I know that I felt completely adrift at first.

My mate, while being supportive, was even more clueless than me at

first. He still hasn't done any research or reading on the disease.

And at first, while I knew he believed I had it, while I was

beginning to understand the impact this might have on my/our life, he

definitely didn't see that.

I've been very persistant in sharing my growing knowledge-base with

him. When I read something new that might apply, I tell him. I

carefully explain *why* I can't do certain things instead of just

telling him that I can't. Over the past 2 months he's learned a lot

through me and when I need to, I remind him of the " whys " .

I hope that your dr visit goes well and that you are soon on the road

to relief!

Kim

>

> 2 weeks ago my dr office called me and told me over the phone " you

> have RA see you on Jan 3rd for you next appt. " I have been on the

> computer for the last 2 weeks looking for info, I have lots of

> questions for the dr. Not sure he will have lotrs of answers though.

> I will let everyone know when I get back from appt.

> I feel so alone because it seems as though my husband is not really

> sure what to do. For over a year I felt as though I was going out

of

> my mind saying that I was always in pain and very tired, I know he

now

> belives me, he just has not asked any questions about it and when I

> ask him if he as looked anything up he just says no. Has anyone

else

> experinced this with their spouse? If so how long does it take

them

> to come around?

> any help will be great, thanks

>

>

> Kolleen

>

[Guest guest]

Hi

Hang in there

Usually, men are fixers- if they can't fix a problem, they retreat till they

can find a way to deal with it.

You both will do better after ya see the Dr.

Ask for materials to share with him.

K

-- [ ] I feel alone

2 weeks ago my dr office called me and told me over the phone " you

have RA see you on Jan 3rd for you next appt. " I have been on the

computer for the last 2 weeks looking for info, I have lots of

questions for the dr. Not sure he will have lotrs of answers though.

I will let everyone know when I get back from appt.

I feel so alone because it seems as though my husband is not really

sure what to do. For over a year I felt as though I was going out of

my mind saying that I was always in pain and very tired, I know he now

belives me, he just has not asked any questions about it and when I

ask him if he as looked anything up he just says no. Has anyone else

experinced this with their spouse? If so how long does it take them

to come around?

any help will be great, thanks

Kolleen

[Guest guest]

I agree 100%!~

My hubby cant " fix me " so he just gets depressed about it... He tries to

take care of me, (as long as his lazy streak isnt disturbed..LOL j/k)

Hes a good man, and I wish I wasnt putting my hubby thru this..

Kerry

Kerrys Web Page Design

www.kerryswebpagedesign.com

www.kerrylane.net

[ ] I feel alone

2 weeks ago my dr office called me and told me over the phone " you

have RA see you on Jan 3rd for you next appt. " I have been on the

computer for the last 2 weeks looking for info, I have lots of

questions for the dr. Not sure he will have lotrs of answers though.

I will let everyone know when I get back from appt.

I feel so alone because it seems as though my husband is not really

sure what to do. For over a year I felt as though I was going out of

my mind saying that I was always in pain and very tired, I know he now

belives me, he just has not asked any questions about it and when I

ask him if he as looked anything up he just says no. Has anyone else

experinced this with their spouse? If so how long does it take them

to come around?

any help will be great, thanks

Kolleen

[Guest guest]

Hi Kolleen

Could he maybe come with you for the appt?

He may need to hear the doc talk to you about it before

it finally sinks in. I think that there are a lot of spouses

who have trouble seeing us in pain and not being able to do anything about

it or sometimes believing we feel that bad when we look o.k.

Good luck at your appt. Hopefully the doc will find the right med or meds for

you.

Joy

" klaporte.6899 " <klaporte.6899@...> wrote:

2 weeks ago my dr office called me and told me over the phone " you

have RA see you on Jan 3rd for you next appt. " I have been on the

computer for the last 2 weeks looking for info, I have lots of

questions for the dr. Not sure he will have lotrs of answers though.

I will let everyone know when I get back from appt.

I feel so alone because it seems as though my husband is not really

sure what to do. For over a year I felt as though I was going out of

my mind saying that I was always in pain and very tired, I know he now

belives me, he just has not asked any questions about it and when I

ask him if he as looked anything up he just says no. Has anyone else

experinced this with their spouse? If so how long does it take them

to come around?

any help will be great, thanks

Kolleen

[Guest guest]

My EX hubby wouldn't even go to the doctor with me. He didn't want to know

anything about RA or anything else. In fact the 3 days of hell I went through

in May 06, he left me in bed with no food or water and wouldn't even help me get

out of bed. I left him in Oct 06 and now I'm divorced from him.

--------- [ ] I feel alone

2 weeks ago my dr office called me and told me over the phone " you

have RA see you on Jan 3rd for you next appt. " I have been on the

computer for the last 2 weeks looking for info, I have lots of

questions for the dr. Not sure he will have lotrs of answers though.

I will let everyone know when I get back from appt.

I feel so alone because it seems as though my husband is not really

sure what to do. For over a year I felt as though I was going out of

my mind saying that I was always in pain and very tired, I know he now

belives me, he just has not asked any questions about it and when I

ask him if he as looked anything up he just says no. Has anyone else

experinced this with their spouse? If so how long does it take them

to come around?

any help will be great, thanks

Kolleen

[Guest guest]

Kolleen,

Take your husband with you to see your rheummy. As you know this disease

affects you both. Encourage him to ask the doctor any questions he has. He is

probably scared too. Good luck

Pennie in Australia

[ ] I feel alone

2 weeks ago my dr office called me and told me over the phone " you

have RA see you on Jan 3rd for you next appt. " I have been on the

computer for the last 2 weeks looking for info, I have lots of

questions for the dr. Not sure he will have lotrs of answers though.

I will let everyone know when I get back from appt.

I feel so alone because it seems as though my husband is not really

sure what to do. For over a year I felt as though I was going out of

my mind saying that I was always in pain and very tired, I know he now

belives me, he just has not asked any questions about it and when I

ask him if he as looked anything up he just says no. Has anyone else

experinced this with their spouse? If so how long does it take them

to come around?

any help will be great, thanks

Kolleen

Make the switch to the world's best email. Get the new 7 Mail now.

www.7.com.au/worldsbestemail

[Guest guest]

I know how you feel. After 5 yrs my husband still has no understanding. He

has gone once with me to the doc and that was yrs ago and basically a see how

you are and the meds are ok visit, it was like a 5 min thing. Old doc that i

am glad to be rid of. Since being here and now on Shore duty with the military

he has not gone once, has never even met my doc. I did have to talk him into

giving me my humira shots since I just cannot do it, but other than that he

is of no support. If something isn't done ect its always well you stay at

home thing, yes I stay at home cause half the time just running the vacume

makes

me so tired ect. I do hope for you get him involved and to the doc with you,

I think if mine would go he would understand more, but he won't. Best of

luck to you

>

> 2 weeks ago my dr office called me and told me over the phone " you

> have RA see you on Jan 3rd for you next appt. " I have been on the

> computer for the last 2 weeks looking for info, I have lots of

> questions for the dr. Not sure he will have lotrs of answers though.

> I will let everyone know when I get back from appt.

> I feel so alone because it seems as though my husband is not really

> sure what to do. For over a year I felt as though I was going out

of

> my mind saying that I was always in pain and very tired, I know he

now

> belives me, he just has not asked any questions about it and when I

> ask him if he as looked anything up he just says no. Has anyone

else

> experinced this with their spouse? If so how long does it take

them

> to come around?

> any help will be great, thanks

>

>

> Kolleen

>

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

You are so not alone. I was married when I was diagnosed but now I am

divorced. My ex was abusive so he was an ass about it all. He thought

I was making my aches and pains up. Hopefully you have a supportive

loving spouse. All I can say is educate, educate, edcucate. Print out

information and read it with him. Learn the disease yourself inside

and out and that way you can not only explain it to him but to anyone

else that you are surrounded by. I have been going on 5 years with RA

and my loved ones still dont understand. They wonder how one day I

can be semi normal and the next cant get out of bed. So just learn as

much as you can. I was 29 when I was diagnosed and I had a 1 year old

and an 8 year old. That was hard not being able to keep up with them

and be a normal mom. Hang in there.

>

> 2 weeks ago my dr office called me and told me over the phone " you

> have RA see you on Jan 3rd for you next appt. " I have been on the

> computer for the last 2 weeks looking for info, I have lots of

> questions for the dr. Not sure he will have lotrs of answers though.

> I will let everyone know when I get back from appt.

> I feel so alone because it seems as though my husband is not really

> sure what to do. For over a year I felt as though I was going out

of

> my mind saying that I was always in pain and very tired, I know he

now

> belives me, he just has not asked any questions about it and when I

> ask him if he as looked anything up he just says no. Has anyone

else

> experinced this with their spouse? If so how long does it take

them

> to come around?

> any help will be great, thanks

>

>

> Kolleen

>

[Guest guest]

,

Thanks for the kind words, the great thing about this group is the support,

that is what I need. I am lucky enough to have kids that are wonderful and

understanding, so it takes away that the hubby isn't. We have been married 17

almost 18yrs so i was hoping he would be better about it. Just keep hoping

though and taking it day by day

Tammie

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

I am lucky that I have a supportive husband who comes with me to

appointments and helps me out when I am having a bad day w/ my RA and

fibro. I was diagnosed 7 years and I have been married for almost 5

years. When and I got married, he knew and educated himself on

RA/fibro and knew he would eventually have to take care of me.

When I first got diagnosed, I was in a long term relationship and he

didn't ask questions or even cared enough when I told him.

The best advice I can give you is to surround yourself with

supportive people. Friends and family may not understand first hand

on what you are going through, but everyone does have the ability to

sympathize. Your husband may not understand, because he may not want

to acknowledge that one day he might have to take care of you. It

can be a scary thing to go through, espeically when you are watching

someone you love be in chronic pain and there is nothing you can do

to help them out. My husband wishes that he can take some of my pain

away, but he knows there is nothing he can do physically to make me

feel better when I am having a flare up. Open communication is the

key. The support system here is great...know that you can count on

us. Take care

> >

> > 2 weeks ago my dr office called me and told me over the

phone " you

> > have RA see you on Jan 3rd for you next appt. " I have been on

the

> > computer for the last 2 weeks looking for info, I have lots of

> > questions for the dr. Not sure he will have lotrs of answers

though.

> > I will let everyone know when I get back from appt.

> > I feel so alone because it seems as though my husband is not

really

> > sure what to do. For over a year I felt as though I was going

out

> of

> > my mind saying that I was always in pain and very tired, I know

he

> now

> > belives me, he just has not asked any questions about it and

when I

> > ask him if he as looked anything up he just says no. Has anyone

> else

> > experinced this with their spouse? If so how long does it take

> them

> > to come around?

> > any help will be great, thanks

> >

> >

> > Kolleen

> >

>

>

>

>

>

>

>

>

> **************Start the year off right. Easy ways to stay in

shape.

> http://body.aol.com/fitness/winter-exercise?

NCID=aolcmp00300000002489

>

>

>

[Guest guest]

My husband did not understand how severe the pain and exhaustion

was. I tried working, but after 4 hours this 50 y.o.body walked like

a person 95. I could not bathe or wash my hair, I'd screem when he

tried to help me into the tub. It took me 30 min to get out of bed

and another 40 min to get clothes on WITH his help. Hubby could SEE

the difficulty I was having and he accused me of being a wuss! (aside

from my hands being swollen like a balloon & peeling). Since I got

on disability (on first try) he reasoned that it must be serious.

Add to that his daughter has RA AND was a nurse, she has been telling

him what RA is about, tiredness, flares & all (he does not understand

me when I tell him, it's a mental block thing for him). But the

problems nearly caused a divorce here, it did get real ugly for a

while. The truth is someone has to tell your hubby what RA is & what

it does - damage, pain, physical drain..

> >

> > 2 weeks ago my dr office called me and told me over the

phone " you

> > have RA see you on Jan 3rd for you next appt. " I have been on

the

> > computer for the last 2 weeks looking for info, I have lots of

> > questions for the dr. Not sure he will have lotrs of answers

though.

> > I will let everyone know when I get back from appt.

> > I feel so alone because it seems as though my husband is not

really

> > sure what to do. For over a year I felt as though I was going

out

> of

> > my mind saying that I was always in pain and very tired, I know

he

> now

> > belives me, he just has not asked any questions about it and when

I

> > ask him if he as looked anything up he just says no. Has anyone

> else

> > experinced this with their spouse? If so how long does it take

> them

> > to come around?

> > any help will be great, thanks

> >

> >

> > Kolleen

> >

>

[Guest guest]

I can say my husband and family are very supportive but in the

beginning before they did not have an actual diagnosis on me I felt

the same way like no one understood what i was going through it is so

frustrating when you cannot describe or have them feel what we all go

through. I was diagnosed Sept 2006 33yrs old I have made my dad read

and read because he was the same way about how can one day you seem

ok then the next you are suffering so bad. All we can do is educate

ourselves and our families continuosly. I am so sorry to those of

you who do not have the support. However I have issues with my

sister who lives far from me. She is a nurse and thinks that she

knows what I need to do over my doctors and that if I stopped all my

meds and excersised then I would be ok. Can you believe that one. I

was in shock but I have learned that our families are scared because

we are suffering and they hate to see that and can do nothing about

it. I dont know what to do about getting people to understand how

bad the pain is and how you feel so helpless. I am so thankful for

my husband and 3 boys they keep me going but it took them awhile to

understand. To those of you who have this problem dont give up on

them they are scared for you and get mad because they cannot help

you. This is such an ugly disease but keep the faith and we can get

through somehow. I was turned down for disability my first time and

I put in an appeal. Has anyone gone through the appeal process? If

so what should I expect. I was so use to working and I hate being

broke and seeing my husband work so much and having to rely on family

to help. Well I hope I have helped somewhat. We just need to keep

leaning on eachother. Blessing to you all!!!!!!!!!!!!!!!!!!!!!!!!!!!!

> > >

> > > 2 weeks ago my dr office called me and told me over the

> phone " you

> > > have RA see you on Jan 3rd for you next appt. " I have been on

> the

> > > computer for the last 2 weeks looking for info, I have lots of

> > > questions for the dr. Not sure he will have lotrs of answers

> though.

> > > I will let everyone know when I get back from appt.

> > > I feel so alone because it seems as though my husband is not

> really

> > > sure what to do. For over a year I felt as though I was going

> out

> > of

> > > my mind saying that I was always in pain and very tired, I know

> he

> > now

> > > belives me, he just has not asked any questions about it and

when

> I

> > > ask him if he as looked anything up he just says no. Has

anyone

> > else

> > > experinced this with their spouse? If so how long does it take

> > them

> > > to come around?

> > > any help will be great, thanks

> > >

> > >

> > > Kolleen

> > >

> >

>

[Guest guest]

my husband has been really understanding, but after a bought with reactive

arthritis (the

result of food poisoning) this past summer, he has been even better! nothing

like going

through it yourself to help you increase your empathy, huh? friends and family

notice my

hands so that helps. at least it's something you can SEE, unlike the pain in

other areas at

times. also, i'm overweight and i know that many people who know nothing about

this

disease think that losing weight is my answer. it helps when i can show my

hands and

explain. it's surprised me how many people know someone with RA. several folks

at my job

have relatives or others close to them who suffer. anyway, the advice is good:

educate,

educate, educate.

[Guest guest]

Hi, I am new to this group and I have already felt so much support,

just hearing about other people and their stories. Apart of me is

still in denial and I feel that being 27 is too young to have this;

RA. I was recently diagnosed, about two months after I had my first

child. I am taking Humira twice a month, sulfasalazine four times a

day, prednisone once a day. I am very lucky that I have a wonderful

husband that is supportive, but sometimes I do feel that it is putting

a strain on our marriage. Some days I act as if nothing is wrong and I

hang out all day with family running errands, and then when the day is

ending I am in so much pain. What I am trying to say is that it is

nice to know I am not the only one out there.

> >

> > 2 weeks ago my dr office called me and told me over the phone " you

> > have RA see you on Jan 3rd for you next appt. " I have been on the

> > computer for the last 2 weeks looking for info, I have lots of

> > questions for the dr. Not sure he will have lotrs of answers though.

> > I will let everyone know when I get back from appt.

> > I feel so alone because it seems as though my husband is not really

> > sure what to do. For over a year I felt as though I was going out

> of

> > my mind saying that I was always in pain and very tired, I know he

> now

> > belives me, he just has not asked any questions about it and when I

> > ask him if he as looked anything up he just says no. Has anyone

> else

> > experinced this with their spouse? If so how long does it take

> them

> > to come around?

> > any help will be great, thanks

> >

> >

> > Kolleen

> >

>

>

>

>

>

>

>

>

> **************Start the year off right. Easy ways to stay in shape.

> http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

>

>

>

[Guest guest]

--- In , " savmareli1974 " <savmareli1974@...>

wrote:

>

> You are so not alone. I was married when I was diagnosed but now I am

> divorced. My ex was abusive so he was an ass about it all. He thought

> I was making my aches and pains up.

Wow, i can so relate to this topic. I was married 21 years to a jerk

who didn't do sick... now divorced 9 years and not doing well ... I

can't imagine he could have ever stood by me. He was so abusive and

blamed me as if it was something i had done to him!

Suz

[Guest guest]

I AM OVERWEIGHT TOO WITH RA AND I AM SICK AND TIRED OF PEOPLE TELLING ME IF YOU

WOULD ONLY LOOSE WEIGHT YOU WOULD FEEL SO MUCH BETTER. I AM SICK OF HEARING IT.

Peek <wendyhollander@...> wrote: my husband has been really

understanding, but after a bought with reactive arthritis (the

result of food poisoning) this past summer, he has been even better! nothing

like going

through it yourself to help you increase your empathy, huh? friends and family

notice my

hands so that helps. at least it's something you can SEE, unlike the pain in

other areas at

times. also, i'm overweight and i know that many people who know nothing about

this

disease think that losing weight is my answer. it helps when i can show my hands

and

explain. it's surprised me how many people know someone with RA. several folks

at my job

have relatives or others close to them who suffer. anyway, the advice is good:

educate,

educate, educate.

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

>

> 2 weeks ago my dr office called me and told me over the phone " you

> have RA see you on Jan 3rd for you next appt. " I have been on the

> computer for the last 2 weeks looking for info, I have lots of

> questions for the dr. Not sure he will have lotrs of answers

though.

> I will let everyone know when I get back from appt.

> I feel so alone because it seems as though my husband is not

really

> sure what to do. For over a year I felt as though I was going out

of

> my mind saying that I was always in pain and very tired, I know he

now

> belives me, he just has not asked any questions about it and when

I

> ask him if he as looked anything up he just says no. Has anyone

else

> experinced this with their spouse? If so how long does it take

them

> to come around?

> any help will be great, thanks

>

>

> Kolleen

>hi my name is melynda .ive had ra 4 32yrs & i was always tired & in

pain, but it will get better. you do need the support of your

husband so he can kind of get to know what u r going through.at

first my husband was the same way but he realized i was not joking!!

so just give him some time to absorbe your life changes..im not

saying its going 2 b easy but its a lesson 4 a husband who wants 2

learn. i c it this way the 2 of u will learn together. that would b

great!b patient,kind,loving & willing to listen when hes readt 2

talk.you r never alone,my friend melynda<mapgamez@...>