Re: Help me deal with the emotional pain

[Guest guest]

Dear ina,

I'm sorry you are feeling so down. We have all been there many times.

Sometimes I feel so sad, frustrated, and angry that my dear daughter has had to

endure so much, and she's not even 7 years old yet. A few things that have

helped me: 1) Reminding myself how resilient and adaptive kids are. They are

amazing! I take my cues from Sammy. I figure if she can remain cheerful

and positive, so I can I (most of the time)! 2) Confiding in a good,

supportive friend. Venting here is good, but if you have a close friend you

feel

comfortable with, it can really help to just have some one look you in the eye

and acknowledge what a tough thing this is to deal with. 3) Accepting that

there are going to be days when I just can't help feeling depressed about the

situation, but also knowing that it, too, shall pass.

If your friends and family don't understand, educate them. Give them papers

on and the other fever syndromes to read. Explain to them what it

feels like to see your child suffering so much. Ask them to consider putting

themselves in your shoes, or your child's shoes. Sometimes we try so hard to

put on a brave face and pretend that nothing's wrong that people honestly have

no idea how much we can be hurting inside. My experience has been that when

you let yourself be vulnerable and let people know you're hurting, they will

respond with the support you need.

Take care. I'm sorry we all have to be here, but am thankful none of us

have to feel alone in this difficult situation.

--Lori (mom to Sammy, 6.5 yrs, JRA/uveitis/?ulcerative colitis?)

[Guest guest]

> All I keep thinking is " hang in there " . I know it is much easier to say than

to do. I think we all get tired and frustrated and emotional seeing our children

ill. I also think we all know that a lot of the people in our lives do not

understand what we go through because our children have an illness that is

typically unheard of. There are times when I tell people about it, I can feel

them thinking " Is she making all of this up? "

You are not alone. You are doing what you can for your child. It is ok to take a

moment and cry. I know I have been there too. You get so upset and you think you

can't make it through another fever, but you do. And your child does too.

Helpless comes all the time when you have an ill child, then there are those of

us who have chronically ill children so it comes to us more often. It is hard!

It is very hard!!

Things I have done to help me get through it is read the posts on this message

board to see that I am not alone in this struggle. I have taken the time to

explain my daughters illness to anyone in my circle of friends and family to try

to get them to understand it and be at least sympathetic to our struggles. I

keep reading on the illness to keep my self knowledgable as possible - which is

very tough at times since there isn't that much out there (Fran has made it easy

by putting many articles on this website home page).

Talk about with others. Talk about it here. We will listen.

Please take care of yourself!

Lori

Mom to four daughters including (2) ?PFS

[Guest guest]

Your words and thoughts are the same way I'm feeling

right now. My 7 year old son Adam just woke up feeling

really bad. I don't think it ever gets easier to see

your child suffer. The only comfort I have for you is

we all know how and what your feeling. It is hard. And

I've had the bathroom moments many times.I may need

one now. I do hope it gets easier. But I have a

feeling it may not till it's gone for good. Eva

--- wasas98 <amiron@...> wrote:

> This is the first time that I enter this group my

> husband is and

> I am the mother of Christian. He is three years and

> a half and he was

> detected with this for one year and a half. For all

> this time I have

> dedicated all of my energy in trying to find a

> solution and believing

> that this was going to go away. Then I try to

> believe that if I

> accepted this the pain will go away. Every time he

> has an episode I

> get depressed and hopeless that there is nothing I

> can do to make it

> go away. We still have 3 years to go. Do you learn

> to deal with the

> pain? What do you do not to feel hopeless and

> tired?I say to myself

> this time it will not affect me but I see myself

> crying alone in the

> bathroom. I have not asked for emotional help

> because nobody

> understands me my mom, sister, freinds. Freinds say

> that their kids

> also get sick, that all kids get sick. Doctors in

> Guatemala don't

> believe you. Family and freinds think you want

> attention. I had

> decided not to say anything at all until now.

> Because keeping quiet

> hasn't help because I still feel empty inside and

> hopless that I can't

> take that pain away. Have made him do therapies that

> havn't helped at

> all. Thank you for listening to me.

>

> ina mother of Christian 3 and Katia 1.

>

>

>

>

>

__________________________________________________

[Guest guest]

My heart aches for you. I am so sorry you are

experiencing little or no support! This is not an easy

road, and many people just don't understand what

happens with this illness. Please don't feel hopeless,

there is ALWAYS hope. Also, I must encourgae you to

always believe in the best things happening, as your

son will learn by your example and he will get his

cues from you!

Be well and blessed and take good care.

Lori Todaro

Mom to Nino

--- wasas98 <amiron@...> wrote:

> This is the first time that I enter this group my

> husband is and

> I am the mother of Christian. He is three years and

> a half and he was

> detected with this for one year and a half. For all

> this time I have

> dedicated all of my energy in trying to find a

> solution and believing

> that this was going to go away. Then I try to

> believe that if I

> accepted this the pain will go away. Every time he

> has an episode I

> get depressed and hopeless that there is nothing I

> can do to make it

> go away. We still have 3 years to go. Do you learn

> to deal with the

> pain? What do you do not to feel hopeless and

> tired?I say to myself

> this time it will not affect me but I see myself

> crying alone in the

> bathroom. I have not asked for emotional help

> because nobody

> understands me my mom, sister, freinds. Freinds say

> that their kids

> also get sick, that all kids get sick. Doctors in

> Guatemala don't

> believe you. Family and freinds think you want

> attention. I had

> decided not to say anything at all until now.

> Because keeping quiet

> hasn't help because I still feel empty inside and

> hopless that I can't

> take that pain away. Have made him do therapies that

> havn't helped at

> all. Thank you for listening to me.

>

> ina mother of Christian 3 and Katia 1.

>

>

>

>

>

__________________________________________________

[Guest guest]

Hello

I have been dealing with the same issue alone this past year. I also

felt like I was maybe imagining it and maybe being paranoid, but after

so long you just realize that it really is happening. My little boy

6yrs is also finding it hard as he thought that he was dying. He asks

me when will this go away and when will he get better. I also find

myself in the bathroom crying and I dont have anyone to talk to about

it except my husband. We just put on a happy face and pretend its all

ok that he gets sick every few weeks. I dont know what the future

holds for us but we are the support system for our son and I dont want

him to think that he is 'sick' only that he gets sick sometimes. He

was relieved to hear that there are other children out there with the

same problems so maybe joining this group will be the best thing we

have done for him. I have a question. My little one seems to be really

emotional and very clingy after a bout of fever. How do you all deal

with this?

Lee

[Guest guest]

Dear ina,

Your post was very touching. I understand how you

feel. I think most of us can. Please know that we

are here for you. Hang in there! Cheri, mom to

11

--- wasas98 <amiron@...> wrote:

> This is the first time that I enter this group my

> husband is and

> I am the mother of Christian. He is three years and

> a half and he was

> detected with this for one year and a half. For all

> this time I have

> dedicated all of my energy in trying to find a

> solution and believing

> that this was going to go away. Then I try to

> believe that if I

> accepted this the pain will go away. Every time he

> has an episode I

> get depressed and hopeless that there is nothing I

> can do to make it

> go away. We still have 3 years to go. Do you learn

> to deal with the

> pain? What do you do not to feel hopeless and

> tired?I say to myself

> this time it will not affect me but I see myself

> crying alone in the

> bathroom. I have not asked for emotional help

> because nobody

> understands me my mom, sister, freinds. Freinds say

> that their kids

> also get sick, that all kids get sick. Doctors in

> Guatemala don't

> believe you. Family and freinds think you want

> attention. I had

> decided not to say anything at all until now.

> Because keeping quiet

> hasn't help because I still feel empty inside and

> hopless that I can't

> take that pain away. Have made him do therapies that

> havn't helped at

> all. Thank you for listening to me.

>

> ina mother of Christian 3 and Katia 1.

>

>

>

>

>

__________________________________________________

[Guest guest]

>Lee, I want to thank you for your words they were really helpful. It

really helps knowing that I am not alone in this process.Christian

also gets very achy and emotional after a fever.We usully give him a

lot of affection the first two days he sleeps with us. We give him the

steroids the second day always in the morning it makes him feel

better. That day his still very achy so he rests and sleeps alot. The

third day he has his routine eventhough he crys or tandrums. I feel

that it has helped as alot do this type of routine and make him

responsible.

paulina

> Hello

> I have been dealing with the same issue alone this past year. I also

> felt like I was maybe imagining it and maybe being paranoid, but after

> so long you just realize that it really is happening. My little boy

> 6yrs is also finding it hard as he thought that he was dying. He asks

> me when will this go away and when will he get better. I also find

> myself in the bathroom crying and I dont have anyone to talk to about

> it except my husband. We just put on a happy face and pretend its all

> ok that he gets sick every few weeks. I dont know what the future

> holds for us but we are the support system for our son and I dont want

> him to think that he is 'sick' only that he gets sick sometimes. He

> was relieved to hear that there are other children out there with the

> same problems so maybe joining this group will be the best thing we

> have done for him. I have a question. My little one seems to be really

> emotional and very clingy after a bout of fever. How do you all deal

> with this?

> Lee

>

[Guest guest]

>

> > This is the first time that I enter this group my

> > husband is and

> > I am the mother of Christian. He is three years and

> > a half and he was

> > detected with this for one year and a half. For all

> > this time I have

> > dedicated all of my energy in trying to find a

> > solution and believing

> > that this was going to go away. Then I try to

> > believe that if I

> > accepted this the pain will go away. Every time he

> > has an episode I

> > get depressed and hopeless that there is nothing I

> > can do to make it

> > go away. We still have 3 years to go. Do you learn

> > to deal with the

> > pain? What do you do not to feel hopeless and

> > tired?I say to myself

> > this time it will not affect me but I see myself

> > crying alone in the

> > bathroom. I have not asked for emotional help

> > because nobody

> > understands me my mom, sister, freinds. Freinds say

> > that their kids

> > also get sick, that all kids get sick. Doctors in

> > Guatemala don't

> > believe you. Family and freinds think you want

> > attention. I had

> > decided not to say anything at all until now.

> > Because keeping quiet

> > hasn't help because I still feel empty inside and

> > hopless that I can't

> > take that pain away. Have made him do therapies that

> > havn't helped at

> > all. Thank you for listening to me.

> >

> > ina mother of Christian 3 and Katia 1.

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

>

> > This is the first time that I enter this group my

> > husband is and

> > I am the mother of Christian. He is three years and

> > a half and he was

> > detected with this for one year and a half. For all

> > this time I have

> > dedicated all of my energy in trying to find a

> > solution and believing

> > that this was going to go away. Then I try to

> > believe that if I

> > accepted this the pain will go away. Every time he

> > has an episode I

> > get depressed and hopeless that there is nothing I

> > can do to make it

> > go away. We still have 3 years to go. Do you learn

> > to deal with the

> > pain? What do you do not to feel hopeless and

> > tired?I say to myself

> > this time it will not affect me but I see myself

> > crying alone in the

> > bathroom. I have not asked for emotional help

> > because nobody

> > understands me my mom, sister, freinds. Freinds say

> > that their kids

> > also get sick, that all kids get sick. Doctors in

> > Guatemala don't

> > believe you. Family and freinds think you want

> > attention. I had

> > decided not to say anything at all until now.

> > Because keeping quiet

> > hasn't help because I still feel empty inside and

> > hopless that I can't

> > take that pain away. Have made him do therapies that

> > havn't helped at

> > all. Thank you for listening to me.

> >

> > ina mother of Christian 3 and Katia 1.

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

>Lori, thank you for your kind words. You are right I have been trying

to avoid my pain by not talking about it instead I should talk about

it to heal the pain.Thank you for listening ina

>

> > All I keep thinking is " hang in there " . I know it is much easier

to say than to do. I think we all get tired and frustrated and

emotional seeing our children ill. I also think we all know that a lot

of the people in our lives do not understand what we go through

because our children have an illness that is typically unheard of.

There are times when I tell people about it, I can feel them thinking

" Is she making all of this up? "

> You are not alone. You are doing what you can for your child. It is

ok to take a moment and cry. I know I have been there too. You get so

upset and you think you can't make it through another fever, but you

do. And your child does too. Helpless comes all the time when you have

an ill child, then there are those of us who have chronically ill

children so it comes to us more often. It is hard! It is very hard!!

> Things I have done to help me get through it is read the posts on

this message board to see that I am not alone in this struggle. I have

taken the time to explain my daughters illness to anyone in my circle

of friends and family to try to get them to understand it and be at

least sympathetic to our struggles. I keep reading on the illness to

keep my self knowledgable as possible - which is very tough at times

since there isn't that much out there (Fran has made it easy by

putting many articles on this website home page).

> Talk about with others. Talk about it here. We will listen.

> Please take care of yourself!

> Lori

> Mom to four daughters including (2) ?PFS

>

[Guest guest]

>

> > This is the first time that I enter this group my

> > husband is and

> > I am the mother of Christian. He is three years and

> > a half and he was

> > detected with this for one year and a half. For all

> > this time I have

> > dedicated all of my energy in trying to find a

> > solution and believing

> > that this was going to go away. Then I try to

> > believe that if I

> > accepted this the pain will go away. Every time he

> > has an episode I

> > get depressed and hopeless that there is nothing I

> > can do to make it

> > go away. We still have 3 years to go. Do you learn

> > to deal with the

> > pain? What do you do not to feel hopeless and

> > tired?I say to myself

> > this time it will not affect me but I see myself

> > crying alone in the

> > bathroom. I have not asked for emotional help

> > because nobody

> > understands me my mom, sister, freinds. Freinds say

> > that their kids

> > also get sick, that all kids get sick. Doctors in

> > Guatemala don't

> > believe you. Family and freinds think you want

> > attention. I had

> > decided not to say anything at all until now.

> > Because keeping quiet

> > hasn't help because I still feel empty inside and

> > hopless that I can't

> > take that pain away. Have made him do therapies that

> > havn't helped at

> > all. Thank you for listening to me.

> >

> > ina mother of Christian 3 and Katia 1.

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>