Depression

February 13, 2009

I really would recommend a therapist for you and your daughter. Sometimes

being able to break down and vent to a third party is the best! I was never

a fan of counseling, but I went today for the first time in years and feel

much better. I feel like such a burden to my family, a failure as a mother

and I fear my children will inherit this disease. To be able to 'vomit' up

all these emotions to someone who wasn't trying to 'fix' or 'judge' was

priceless.

I'm in my late 30s and my friends (who are Lets!) ask " are you better yet? "

So even the people in the 'know' have to be educated. Maybe you should

throw a formal party for your daughter and have a speaker from the Arthritis

Society in to educate folks. It could be a fundraiser/awareness party. For

example, I am an Arbonne consultant. I am going to throw an Arbonne party

and invite all my friends. I am going to have a speaker talk about RA. All

proceeds from things purchased that night will go to the Arthritis

Foundation. My goal is to raise $1500. And maybe my friends and relatives

will learn something so I don't have to explain myself everytime.

{{{big gentle hugs}}}

_____

From: [mailto: ] On

Behalf Of Lesley Rafferty

Sent: Friday, February 13, 2009 2:47 PM

Subject: Re: [ ] Depression

Of course you are affected, it is our natural instinct to protect our

children.

Is there someone that you can talk to about this? Perhaps see your doctor.

However, your daughter needs you. She is going through something that is

painful, which can cause depression. You need to distance yourself from your

pain and be strong for her. Yes, by all means scream and shout when she

isn't there but while she is around you need to be matter of fact and

supportive. By turning away from her now you are rejecting her. A teenage

girl is vulnerable at the best of times. To have this awful, hateful disease

on top of everything is heartbreaking but you need to be strong for her.

Stop concentrating on the bad things. Focus on what she can do. Is there a

heated swimming pool nearby that she can use?

If her own mother can turn away from her how abandoned will she feel? Her

self image is very delicate at this age. Please re enforce her positives.

She needs you, this is her time,

Look after yourselves and giver her as much love and support as she needs

x

From: Alleys <alley5comcast (DOT) <mailto:alley5%40comcast.net> net>

Subject: [ ] Depression

@gro <mailto: %40> ups.com

Date: Friday, 13 February, 2009, 8:02 PM

I'm just wondering if folks here have any tips or thoughts on how to deal

with this? Perhaps it is different for me, since it's my daughter not

myself that is dealing with this disease, not sure how that might effect

coping mechanisms. I'm finding this is truly the hardest thing I've ever

had to deal with emotionally (and it's not like I've never had rough stuff

to deal with before, I have been through a lot) and I must admit I am NOT

dealing with it very well at all. I can't go to sleep at night because all

I can think is my daughter is in pain and there is nothing I can do about

it, and then I do not want to get up in the morning because I don't want to

face the reality that my daughter is in severe pain and there is nothing I

can do about it. It was less than a year ago I was watching my daughter

climb up a very tall tree and I had to turn my back and walk away from her

because while I knew she would be cautious as her mom I worry she might get

hurt, so my instinct is to have her feet firmly planted on the ground and to

never take any risks. now I watch my daughter struggle to make it up the

sidewalk, or cross the floor without falling, and I have to turn away

because I am so scared for her just doing the normal 'safe' things and it

breaks my heart! She has been dancing ballet since she was 4 and had been

doing pointe work for a few years before this struck and so many times I

would worry about that, she would be so sore and dancing on bloody toes,

etc., but the joy I saw on her face every day after two hours of practice

and it wasn't enough, and especially the happiness she found in performing,

I felt she was so blessed to have found her passion, I've never had that,

known exactly what I wanted to do and what made me happy and she many times

told me how incredibly fortunate she was she got to live her dream of

dancing and she also enjoyed acting and sparring, she would get so bruised

up and never minded the pain, so I know this arthritis must be really bad,

but it just kills me because she has always been so physical and now she

can't even turn a door knob by herself and can barely walk. it doesn't seem

fair to have this all taken away from her. Her friends have stopped

calling. they would always be asking, " are you better, yet? Can you come

play again? " .all the things they did involved a great deal of physical

activity because that's what she enjoyed, she's never been a sit still kind

of girl. We kept thinking this is something that would just go away soon we

just had to get through this but more and more we are starting to think

maybe it won't go away. the first time I even realized that was a

possibility was after going to see the pediatric rheumatologist and after

that visit I spent a week and a half crying in my room. I mean this is just

terrible, I can't even imagine how hard this must be for my daughter and I'm

sure the last thing she needs is an absent mother who can't even get it

together enough to make breakfast for her and her siblings! I talked myself

out of that, but I feel it coming on again and we keep trying new things and

it all feels so hopeless. I need to be better and stronger, but all I do is

try not to cry. I find myself actually *avoiding* my daughter because it

hurts so much to see her fingers so swollen, her joints are bigger than her

father's, and to see her sitting there all the time and then watch her

struggle in excruciating pain just to get up or rearrange herself and I

know she is bored out of her mind and I need to find things for her to do

but I CAN'T FACE IT! She deserves better. I find myself grateful for the

cold because with the long sleeves and long legs I don't have to see her

swollen elbows, knees and ankles. seeing her come out of the shower is pure

torture, I just want to scream at the world. I just can't accept this

reality, and I know I need to.

So, I don't know, is this something that will just always come and go, or is

it just so terrible right now as we come up against the realities of the

situation and it will eventually get easier to deal with? I wonder too about

letting my daughter know how I feel or putting up a front. initially when

this all first started I made very light of it while all the time I was

completely freaking out and she later said how nice it was to have her pain

and symptoms validated once we saw the specialist and so I felt bad that

maybe in my efforts to make her feel this was nothing to worry about I may

have made her feel I wasn't taking her seriously. Maybe now she thinks I

don't care? But I feel if I let her know how much this tears me up she will

have a harder time dealing with it herself. I know that I find great help in

my husband's strength and when he gets upset I feel completely lost. It's

hard to know the right thing, and it's even harder to feel maybe there is no

right thing, it all just feels wrong.

Anyways, thanks for 'listening', if anyone has any thoughts I'd appreciate

it. I don't know if I need a shoulder to cry on or a good reality slap to

get over myself. I know there is so much in the world I can't control, I

can do nothing about, but I always thought I could at least be there for my

children and make their lives great, but now?....

Sharon

February 13, 2009

On Behalf Of Janet Cumbo

Sorry to be harsh, but toughen up, you need to be strong for your daughter

and fight for her.

I doubt you could be any harsher than I am on myself, so no worries there!

I definitely realize I need to be stronger. I'm just not sure how to go

about that, to get to that point. I managed for awhile by just pretending

this isn't really happening. I need to find a way to manage without ignoring

the reality. I need to be able to accept the situation and be joyful. I

just don't know if it's something that will just come with time and maybe I

don't need to be so hard on myself, maybe it's just all part of the grieving

process of letting go of that life right now and learning to accept a new

one, or if there is more I can or should be doing to move towards that goal,

if what I'm feeling and how I'm not coping so well is beyond how I should be

feeling.

Sharon

February 13, 2009

Thank you, Heidi, this is very helpful. her friends are all very considerate

and supportive, it's just that her relationships were very much activity

based and she can't do those activities so it doesn't really make sense to

hang out. she's never been a just hang out person, she's always needed to be

very active and so those were the friends she sought out and enjoyed. She's

always welcome to go watch her friends doing all the things she can no

longer do, but it's not exactly something she wants to do and she doesn't

really have much else to relate to with them. hanging out with people

because they feel sorry for you when they would really rather be doing

something else isn't very fun for her either (she's been offered this and

passed. of course if not for her RA she would not be interested in hanging

out with folks that wanted to just sit around herself). true, we have

discovered a fair weather friend or two, but for the most part it isn't

about that, it's just all her friends are just as busy doing all the things

she used to be just as busy doing and the rest is coming more from her not

really be interested at this time.

At any rate, I appreciate your comments, I just really want to know that she

can be happy and ways I can help with that, it helps to know I can do

something for her.

Sharon

_____

From: [mailto: ] On

Behalf Of sposy@...

Sent: Friday, February 13, 2009 12:42 PM

Subject: Re: [ ] Depression

Hi Sharon,

It's good for you to vent here. You do need to be there for your daughter.

I know how she must be feeling, not being able to do the things she used to,

but once she's on the right medications, she will gain back some of what she

lost. There are no guarantees, but the meds do help. As for her friends,

perhaps they need to be educated as to what your daughter has. Teenagers, or

tweens are tough, but I firmly believe her real friends are not going to

leave her. The last thing your daughter needs is to feel isolated. If you

cry

every time you see her, or act nervous, etc...she will feed off of you and

maybe start to think she can't do anything. With RA, you learn to do things

in

smaller steps. You can have a life, but you do need to make some

adjustments. Please stay positive.............your daughter needs that. Let

the

medications work. We're here to listen, so let it out!

Hugs to you...

Heidi in Mass.

February 13, 2009

Thanks, , I did not join a JRA group because according to the

rheumatologist my daughter does not have this, he feels because of her age

and her symptoms she is really in the adult form category and talking to

people dealing with JRA it seems very different. I mean these are usually

young kids, maybe I'm wrong, but it feels different to me dealing with a

young child going through this, I feel like my daughter is a young adult,

even as young as she is. she's always been so grown up to me!... and I see

her life being robbed from her just as it's really barely begun.

Understanding how other adults are able to navigate this disease feels more

helpful to me right now and I've been able to gain some insight into this

which I am so grateful for, that I just haven't been able to talking to

parents with children with JRA... she isn't yet having to worry about

earning a living or caring for her own children (although she talks about

this all the time and I wonder about that for her as well) but in all other

ways I feel she was very independent and in control of her own life and

goals, she had it all mapped out already and was very much in charge and now

she has to rely on the rest of us and her life plans will be very different.

Or maybe I'm just making excuses to avoid reading about poor little kids

suffering with this. it's a good idea to ask the PR about help in this and I

have thought of that, but it's hard because my daughter's there and I'm

still trying to keep up that happy, joyful front and my efforts to get a

private moment never seem to work out. and, again, while on one hand I'm

sure other parents would be able to relate to the pressure of making

difficult medical decisions, ultimately I just want to have an understanding

of what it feels like from her perspective. She's really enjoyed

communicating with other adults dealing with this disease and seems to have

more in common and more to relate to with other adults with RA than with

other children. Maybe I should reconsider and join that group as well,

though. Thank you for the link.

Sharon

_____

From: [mailto: ] On

Behalf Of

Sent: Friday, February 13, 2009 1:40 PM

Subject: Re: [ ] Depression

Sharon,

I'm very sorry about what your daughter and you are going through.

It may help to join a group for parents with children who have

arthritis, like this one:

http://health. <juvenile arthritis/>

/group/juvenile arthritis/

Your daughter's pediatric rheumatologist may also have ideas about a

counselor or other parents with whom you can discuss these issues.

Good luck,

Not an MD

February 13, 2009

>On Behalf Of Lesley Rafferty:

>You need to distance yourself from your pain and be strong for her. Yes, by

all means scream and shout when she isn't there but while she is around you

need to be matter of fact and supportive. By turning away from her now you

are rejecting her. A teenage girl is >vulnerable at the best of times. To

have this awful, hateful disease on top of everything is heartbreaking but

you need to be strong for her. Stop concentrating on the bad things. Focus

on what she can do. Is there a heated swimming pool nearby that she can use?

..If her own mother can turn away from her how abandoned will she feel? Her

self image is very delicate at this age. Please re enforce her positives.

She needs you, this is her time,

I think a big factor in this for me is that I want to be hopeful and yet

that seems to lead to disappointment so rather than focusing on what she can

do, as you suggest, I continue to reconfront all those bad things again and

again. we are starting to make changes to redefine her life, because it just

can't be what it once was. it's hard to find that balance between having

hope that she can someday return to her dreams and learning to find new

dreams and neither one of us right now is quite certain which direction to

invest our energies in.

For the record, just to reassure everyone, because of this disease I

actually end up spending much more time with her now that she is not so busy

doing so many things (although we are working on finding more activities for

her that she can enjoy regardless of RA, haven't tried the swimming yet but

hope to start with that next week, actually!), so while I sometimes stay a

little longer in the bathroom or check on things on the stove a little more

than I need to, she is still getting more mommy time than ever. I just want

to keep it that way and keep being positive for her, as it sounds like I

really need to be. I'm afraid that if she sees how sad I am she will think

she's a burden, and I'm afraid that if I pretend not to care she will think

I think she's weak, and, really, I'm just afraid. I want the best for her,

and it doesn't matter to me what that is, but it matters to me terribly how

it matters to her.

So, again, thanks for 'listening'

Sharon

February 14, 2009

Hi Sharon

I truly feel for your situation. I personally as a sufferer feel

helpless at times helping myself but it would feel even worse to have

to watch your child suffer and feel this helpless. All you are

feeling is natural and things I believe will change over time. At

least that is how I have been.

Sometimes I think the anger and lack of acceptane is part of the

course to help us fight. My thinking goes that there's a good

balance somewhere between acceptance and fighting. If you lay back

and accept it too much it can take you over but if you fight it too

much it can make you worse - we / she is sick that's the

unfortunately reality.

I'm going to digress from what others have said and suggest that it's

not always great to show constant strength. Maybe you daughter

needs to know it's ok not to feel ok with this all - and that it's

hurting you too - if not physically emotionally. If you can let her

know this she knows not only that you're human but she can let

herself go this way too if at sometimes she needs to just " feel sorry

for herself " sometimes. Because quite frankly although i'm tough and

pretend it doesn't every so often - I need to do that. Once it's out

it's over and I feel so much better, even if no one is here to hear

me. It's natural to feel like this.

In addition I truly get what you say about your daughter being an

active and activity based friend. This is tough. As i'm the same I

used to wonder why it was me that got this dreaded disease when my

sisters are more than happy to sit and read a book day in day out for

a good time and not swing on swings, ice or roller blade or bike ride

with their kids like I always did. I know I truly never wished it on

them but they didn't use their bodies but could!

The way I got around the physical stuff as best I could was to focus

not on what I couldn't do but what I could still DO. Could you get

her engaged in swimming or a water based sports? They are great for

arthritis and something that she may still be able to do as it's non

weight bearing and is great for keeping the muscles moving etc. The

key is to not overdue it, especially at the start -not just pain bu

for fatigue also. I also found that even though it hurt walking

which i'd always loved (but 18km hikes not around the block

meanders!) soon made me feel emotionally better than sitting around

the house doing naught. Anyway check with her Rheumy but mine said

it wasn't increasing the damage and I found the endorphines produced

with the exercise actually helped significantly with my pain and

depression - sure it won't make it disappear but every little bit

helps. Maybe take the time to do these things with her or ask one of

her friends to join her - this will encourage her and help take her

mind off pain that may still be there.

Think outside that square when you feel in the right frame of mind.

Consider things she might not have normally done that she could still

do now, we aren't disabled we're just physically challenged - discuss

the activity with her and if she'd like to try it at a time when

she's not too overwhelmed. You might be surprised at what she is

still capable of - and some days might be one activity but not

another depending on the degree of joint involvement each time.

There's a lot can be said about positive thinking - it can really

open our minds!

Anyway take care of yourself and it's great she has a mum who truly

cares and wants to do everything she can even if at times you feel

helpless you just being there with her is something that not all of

us have that i'm sure helps more than you realise.

>

> I'm just wondering if folks here have any tips or thoughts on how

to deal

> with this? Perhaps it is different for me, since it's my daughter

not

> myself that is dealing with this disease, not sure how that might

effect

> coping mechanisms. I'm finding this is truly the hardest thing

I've ever

> had to deal with emotionally (and it's not like I've never had

rough stuff

> to deal with before, I have been through a lot) and I must admit I

am NOT

> dealing with it very well at all. I can't go to sleep at night

because all

> I can think is my daughter is in pain and there is nothing I can do

about

> it, and then I do not want to get up in the morning because I don't

want to

> face the reality that my daughter is in severe pain and there is

nothing I

> can do about it. It was less than a year ago I was watching my

daughter

> climb up a very tall tree and I had to turn my back and walk away

from her

> because while I knew she would be cautious as her mom I worry she

might get

> hurt, so my instinct is to have her feet firmly planted on the

ground and to

> never take any risks. now I watch my daughter struggle to make it

up the

> sidewalk, or cross the floor without falling, and I have to turn

away

> because I am so scared for her just doing the normal 'safe' things

and it

> breaks my heart! She has been dancing ballet since she was 4 and

had been

> doing pointe work for a few years before this struck and so many

times I

> would worry about that, she would be so sore and dancing on bloody

toes,

> etc., but the joy I saw on her face every day after two hours of

practice

> and it wasn't enough, and especially the happiness she found in

performing,

> I felt she was so blessed to have found her passion, I've never had

that,

> known exactly what I wanted to do and what made me happy and she

many times

> told me how incredibly fortunate she was she got to live her dream

of

> dancing and she also enjoyed acting and sparring, she would get so

bruised

> up and never minded the pain, so I know this arthritis must be

really bad,

> but it just kills me because she has always been so physical and

now she

> can't even turn a door knob by herself and can barely walk. it

doesn't seem

> fair to have this all taken away from her. Her friends have stopped

> calling. they would always be asking, " are you better, yet? Can you

come

> play again? " .all the things they did involved a great deal of

physical

> activity because that's what she enjoyed, she's never been a sit

still kind

> of girl. We kept thinking this is something that would just go

away soon we

> just had to get through this but more and more we are starting to

think

> maybe it won't go away. the first time I even realized that was a

> possibility was after going to see the pediatric rheumatologist and

after

> that visit I spent a week and a half crying in my room. I mean

this is just

> terrible, I can't even imagine how hard this must be for my

daughter and I'm

> sure the last thing she needs is an absent mother who can't even

get it

> together enough to make breakfast for her and her siblings! I

talked myself

> out of that, but I feel it coming on again and we keep trying new

things and

> it all feels so hopeless. I need to be better and stronger, but all

I do is

> try not to cry. I find myself actually *avoiding* my daughter

because it

> hurts so much to see her fingers so swollen, her joints are bigger

than her

> father's, and to see her sitting there all the time and then watch

her

> struggle in excruciating pain just to get up or rearrange herself

and I

> know she is bored out of her mind and I need to find things for her

to do

> but I CAN'T FACE IT! She deserves better. I find myself grateful

for the

> cold because with the long sleeves and long legs I don't have to

see her

> swollen elbows, knees and ankles. seeing her come out of the shower

is pure

> torture, I just want to scream at the world. I just can't accept

this

> reality, and I know I need to.

>

> So, I don't know, is this something that will just always come and

go, or is

> it just so terrible right now as we come up against the realities

of the

> situation and it will eventually get easier to deal with? I wonder

too about

> letting my daughter know how I feel or putting up a front.

initially when

> this all first started I made very light of it while all the time I

was

> completely freaking out and she later said how nice it was to have

her pain

> and symptoms validated once we saw the specialist and so I felt bad

that

> maybe in my efforts to make her feel this was nothing to worry

about I may

> have made her feel I wasn't taking her seriously. Maybe now she

thinks I

> don't care? But I feel if I let her know how much this tears me up

she will

> have a harder time dealing with it herself. I know that I find

great help in

> my husband's strength and when he gets upset I feel completely

lost. It's

> hard to know the right thing, and it's even harder to feel maybe

there is no

> right thing, it all just feels wrong.

>

> Anyways, thanks for 'listening', if anyone has any thoughts I'd

appreciate

> it. I don't know if I need a shoulder to cry on or a good reality

slap to

> get over myself. I know there is so much in the world I can't

control, I

> can do nothing about, but I always thought I could at least be

there for my

> children and make their lives great, but now?....

>

> Sharon

>

February 14, 2009

Sharon - I'm going to be blunt, here. Snap out of it woman! This isn't

about you - its about your daughter. She needs your unconditional love

and support. She doesn't need to know how you're feeling - she has

enough to deal with on her own. Find a support group or a psychologist

who specializes in parents dealing with their children's chronic

illnesses.

Find out what kind of " hands on " things your daughter may like to do.

Get creative. If you're feeling depressed, can you just imagine what

your daughter must be feeling? She needs your compassion. She needs

you to get out of that bed every morning and do the things that you

used to do before she became ill. If she's falling alot - what about a

walker? If her hands are huge and swollen, what about one of those wax

things to dip her hands in? Change your door knobs to levers. If her

RA meds are not helping her - call her Rheumy. If he/she isn't helping

your daughter to your satisfaction, find another one!

Sharon, its time to stop focusing on what your daughter CAN'T do

anymore and find something she CAN do. She needs friends that would be

willing to just sit with her and talk kid talk. Its time to stop

living your life THROUGH your daughter and start living it FOR her

(and her siblings). I know none of this is easy. I know its breaking

your heart to see her become crippled. But, think of the little girl

INSIDE - she's still there - that hasn't changed. Her shell may be

cracking and falling apart, but INSIDE she is still the daughter you

have loved since birth. SHE NEEDS YOU!! Don't avoid her - that must

hurt her so much - she must feel so unloved and like some kind of a

monster. DON'T DO THAT TO HER!!

I have a daughter that has suffered crippling migraines since she was

9 years old. I know the feeling of helplessness. This same daughter

suffered a stroke two weeks after her son was born. This same daughter

is being taken down physically by Multiple Sclerosis. I KNOW how you

are feeling. But, we can't take the time for a pity party. They needs

us - we have to keep it all together as best we can so we can be there

for them.

Be thankful YOU are healthy and can help your daughter. I have RA and

FM that is taking me down too. I CAN'T help my daughter in the ways I

wish I could. I would give anything to be healthy so that I could help

MY daughter. But you CAN help yours. Get determined. Do research. Get

professional help. Do whatever you have to do to help your whole

family to deal with this. Don't make your daughter feel like a pariah,

an outcast. Get her involved in things she can do. Above all, DON'T

GIVE UP!!

Hang in there, Sharon. Keep posting. We DO care.....Doreen

>

> I'm just wondering if folks here have any tips or thoughts on how

> to deal with this? Perhaps it is different for me, since it's my

> daughter not myself that is dealing with this disease, not sure how

> that might effect coping mechanisms. I'm finding this is truly the

> hardest thing I've ever had to deal with emotionally (and it's not

> like I've never had rough stuff to deal with before, I have been

> through a lot) and I must admit I am NOT dealing with it very well

> at all. I can't go to sleep at night because all I can think is my

> daughter is in pain and there is nothing I can do about it, and

> then I do not want to get up in the morning because I don't want to

> face the reality that my daughter is in severe pain and there is

> nothing I can do about it. It was less than a year ago I was

> watching my daughter climb up a very tall tree and I had to turn my

> back and walk away from her because while I knew she would be

> cautious as her mom I worry she might get hurt, so my instinct is

> to have her feet firmly planted on the ground and to never take any

> risks. now I watch my daughter struggle to make it up the sidewalk,

> or cross the floor without falling, and I have to turn away because

> I am so scared for her just doing the normal 'safe' things and it

> breaks my heart! She has been dancing ballet since she was 4 and

> had been doing pointe work for a few years before this struck and

> so many times I would worry about that, she would be so sore and

> dancing on bloody toes, etc., but the joy I saw on her face every

> day after two hours of practice and it wasn't enough, and

> especially the happiness she found in performing, I felt she was so

> blessed to have found her passion, I've never had that, known

> exactly what I wanted to do and what made me happy and she many

> times told me how incredibly fortunate she was she got to live her

> dream of dancing and she also enjoyed acting and sparring, she

> would get so bruised up and never minded the pain, so I know this

> arthritis must be really bad, but it just kills me because she has

> always been so physical and now she can't even turn a door knob by

> herself and can barely walk. it doesn't seem fair to have this all

> taken away from her. Her friends have stopped calling. they would

> always be asking, " are you better, yet? Can you come play again? "

> All the things they did involved a great deal of physical activity

> because that's what she enjoyed, she's never been a sit still kind

> of girl. We kept thinking this is something that would just go

> away soon we just had to get through this but more and more we are

> starting to think maybe it won't go away. the first time I even

> realized that was a possibility was after going to see the

> pediatric rheumatologist and after that visit I spent a week and a

> half crying in my room. I mean this is just terrible, I can't even

> imagine how hard this must be for my daughter and I'm sure the last

> thing she needs is an absent mother who can't even get it together

> enough to make breakfast for her and her siblings! I talked myself

> out of that, but I feel it coming on again and we keep trying new

> things and it all feels so hopeless. I need to be better and

> stronger, but all I do is try not to cry. I find myself actually

> *avoiding* my daughter because it hurts so much to see her fingers

> so swollen, her joints are bigger than her father's, and to see her

> sitting there all the time and then watch her struggle in

> excruciating pain just to get up or rearrange herself and I

> know she is bored out of her mind and I need to find things for her

> to do but I CAN'T FACE IT! She deserves better. I find myself

> grateful for the cold because with the long sleeves and long legs I

> don't have to see her swollen elbows, knees and ankles. seeing her

> come out of the shower is pure torture, I just want to scream at

> the world. I just can't accept this reality, and I know I need

> to.

>

> So, I don't know, is this something that will just always come and

> go, or is it just so terrible right now as we come up against the

> realities of the situation and it will eventually get easier to

> deal with? I wonder too about letting my daughter know how I feel

> or putting up a front. initially when this all first started I made

> very light of it while all the time I was completely freaking out

> and she later said how nice it was to have her pain and symptoms

> validated once we saw the specialist and so I felt bad that maybe

> in my efforts to make her feel this was nothing to worry about I may

> have made her feel I wasn't taking her seriously. Maybe now she

> thinks I don't care? But I feel if I let her know how much this

> tears me up she will have a harder time dealing with it herself. I

> know that I find great help in my husband's strength and when he

> gets upset I feel completely lost. It's hard to know the right

> thing, and it's even harder to feel maybe there is no right thing,

> it all just feels wrong.

>

> Anyways, thanks for 'listening', if anyone has any thoughts I'd

> appreciate it. I don't know if I need a shoulder to cry on or a

> good reality slap to get over myself. I know there is so much in

> the world I can't control, I can do nothing about, but I always

> thought I could at least be there for my children and make their

> lives great, but now?....

>

> Sharon

February 14, 2009

Ok, I know I already posted a rather harsh post and I really don't

want to keep it up, but I have to address something you said:

" ...she's never been a just hang out person...we have discovered a

fair weather friend or two... " Seems life's injustices has created

just exactly what you two have never wanted to be. It's time to learn

how to be just a " hang out person " and stop being a " fair weathered

friend " yourselves. I understand not wanting to " hang out " and watch

friends do what you are unable to do anymore. But, there are so many

other rewarding things you could be doing together while taking her

handicap into consideration at the same time. It sounds like she is

already feeling depressed. Please, please, please get some help before

it is too late.....Doreen :|

>

> Thank you, Heidi, this is very helpful. her friends are all very

> considerate and supportive, it's just that her relationships were

> very much activity based and she can't do those activities so it

> doesn't really make sense to hang out. she's never been a just hang

> out person, she's always needed to be very active and so those were

> the friends she sought out and enjoyed. She's always welcome to go

> watch her friends doing all the things she can no longer do, but

> it's not exactly something she wants to do and she doesn't really

> have much else to relate to with them. hanging out with people

> because they feel sorry for you when they would really rather be

> doing something else isn't very fun for her either (she's been

> offered this and passed. of course if not for her RA she would not

> be interested in hanging out with folks that wanted to just sit

> around herself). true, we have discovered a fair weather friend or

> two, but for the most part it isn't about that, it's just all her

> friends are just as busy doing all the things she used to be just

> as busy doing and the rest is coming more from her not really be

> interested at this time.

>

> At any rate, I appreciate your comments, I just really want to know

> that she can be happy and ways I can help with that, it helps to

> know I can do something for her.

>

> Sharon

February 14, 2009

“In addition I truly get what you say about your daughter being an

active and activity based friend. This is tough. As i'm the same I

used to wonder why it was me that got this dreaded disease when my

sisters are more than happy to sit and read a book day in day out for

a good time and not swing on swings, ice or roller blade or bike ride

with their kids like I always did. I know I truly never wished it on

them but they didn't use their bodies but could!”

Thank you so much for writing this! This is what just really frustrates me,

of course I wouldn’t wish this on anyone either, but quite frankly some

people’s lives wouldn’t skip a beat! I, for one, don’t use my body or

appreciate it anywhere close to my daughter, this would be MUCH easier on

me, it just isn’t fair, and she never even once took it for granted, nearly

every day she would tell me how lucky she was, argh! Just this last week

she missed out on two really great opportunities, both would’ve been paid as

well! And one is still a possibility next year, but even if she recovers by

then she won’t be in the same shape, so…???

“. If you can let her

know this she knows not only that you're human but she can let

herself go this way too if at sometimes she needs to just " feel sorry

for herself " sometimes. Because quite frankly although i'm tough and

pretend it doesn't every so often - I need to do that. Once it's out

it's over and I feel so much better, even if no one is here to hear

me. It's natural to feel like this.”

I think you are right… I think this needs to be true for me regardless at

this point, because as much as I try to talk myself out of being so sad, it

only seems to get worse and then THAT is what holds me back and makes me run

off into another room, so she doesn’t see my tears. I decided no matter how

upset I was I’m just going to be there, and if I can’t hold back, so be it,

and I feel so much freer and less angry and less helpless… also, when I just

said to her yesterday I’m a little sad that the methotrexate isn’t working

and worried, my daughter had a complete breakdown… in all her life I’ve

never seen her this upset and she kept apologizing and I just kept telling

her it’s okay and ultimately she said she feels better. She was talking to

another lady with RA awhile ago who told her she didn’t know how she could

stand the pain, and my daughter just said she had a choice about it, she

could spend her time feeling miserable when she’s already in enough pain, or

she could choose to focus on the good in her life and she has so much good

to be happy about… I think I wanted to be just as amazing as she is and

forgot to realize she struggles to. I think it feels easier to be honest

with each other about this… maybe I’m wrong, but I just can’t keep up the

façade anymore and it felt really good, as hard as it was to handle seeing

my daughter so sad, to just let it out… I didn’t even feel so sad honestly,

I think trying so hard to hide my feelings has just made me feel worse.

I’m going to try getting her walking outside as well… she’s never been much

for that, except hiking and running and more adventurous stuff, but I think

getting out in the fresh air, even if it doesn’t feel as exciting for her

and more like work will definitely help and be worth the effort, thank you

so much for suggesting that, no doubt being inside so much is wearing down

on her and I hadn’t really thought of how important that might be! I also

think I’ve been making the mistake of avoiding things she can’t *always* do

and as you say, some days are better than others so we don’t have to give up

on those things entirely.

I really appreciate you sharing your feelings and suggestions with me,

!

Sharon

February 14, 2009

I'm sorry, Doreen, if maybe I didn't express this well, I really shouldn't

have used the term " fair-weathered " friend. these are just kids and young

adults I'm talking about here really. I just was trying to express I don't

think because her friends aren't around as much means they aren't really

friends or caring people. If you stop playing golf you just aren't going to

have your golf buddies anymore. I don't think that means your golf buddies

aren't really buddies. I, personally, love just hanging out, but this isn't

what my daughter is interested in although she doesn't have much choice

about it now. it works for me, not so much for her, and so I just feel bad

about that, for her. It's a radical change for her. she was always in

nonstop motion, we were just watching some old videos recently and my

daughter was never once still in any of them, she danced even while watching

tv, or being read to, etc. Anyways, I think in my effort to attempt to make

it clear that it isn't about people being thoughtless and uncaring but more

about just not having as much to do, really, I may have made it less clear?

She doesn't want her friends to stop doing what they would always do just

for her, she just truly isn't interested in that, not from a place of

feeling sorry for herself, but because that's not her thing. I hope that

makes sense.

Sharon

_____

From: [mailto: ] On

Behalf Of Mimi

Sent: Saturday, February 14, 2009 6:53 AM

Subject: [ ] Re: Depression