nervous breakdown

[Guest guest]

You need to speak to us, Valarie, as we understand.

I was in your position last week and cried for 2 days. You are tired of

trying to give your child the most enjoyable life possible, which is

nearly impossible when you LIVE in doctor's offices, cringe every time

you squeeze some money together to put gas in the car to get there, give

your child endless meds, inspect their skin, listen to their lungs (and

in my case, also take their blood pressure), keep accurate current

records, etc.

You are ENTITLED to fall apart! Does not your school district have a

medical home school program? This is a program where THEY do the

schooling and not you. If your child's doc wants him home, you would

qualify. This way, you would catch a bit of a break.

You are being WAY TOO HARD on your self. You can only stretch your self

so far.

If it makes you feel any better-- I crying like a blubbering idiot in

the ER last Sunday about the the difficult hand my child has been dealt,

after the THIRD stick in Port did not work to draw blood cultures.

You do need also to look into respite--- have you a medical home program

or a program for children with special health care needs in your state?

Most states have them They can usually be of assistance.

L

nervous breakdown

I need to rant.I'm definitely falling apart.

I went to a new dr today, the dr who was supposed to help me figure

out, besides the hiatal hernia, what on earth is wrong with my stomach

and the pain and the vomiting. I had to take Brennan with me, bc where

else is he going to go? I get there and there is a sign on the office

door saying no children are allowed in the office. Like they couldnt

call me and tell me that before I drove 40 minutes to get there? and

then after I filled out the paperwork, the receptionist tells me that

since another dr in the practice(I never knew they were in practice

together) had scoped me this summer, I wasnt allowed to switch drs. I

told I couldnt come back for another appt, I scheduled this one around

my kids appts, and, really, I dont have the gas money to drive

aaaaaaaallllllllllll the way there again, to be honest. She went back

and talked to the dr, and said the partner would see me after all. So

I waited----for TWO HOURS--with Brennan in an office with no toys or

anything for him to do, watching as he ran around how his nose is

starting to run and he is getting that barky cough again, and dark

circles under his eyes. My stomach dropped, thinking of him getting

sick. Finally the dr calls me back, acts irritated that I didnt leave

my 4 yr old alone in the waiting room, sits down, opens my file, and

states he refuses to see me, based on the ethical " wrongness " of

treating one of his partners patients, when the other guy had scoped

me first. He got up and left the room. I left that office so angry I

was shaking.

Around the corner from this office is Brennans former speech therapy

building. He saw it and started to cry that he missed his SLP, and

wished he could see her again. So I pulled in, thinking maybe she had

some free time and could talk to him a minute and he would calm down.

We get up there, she comes out to see him, and I looked at her and

just started bawling. For no reason. And I couldnt stop. Right there,

in the middle of the waiting area, with all these other people there,

and its not like I was overly close with her, but for some reason,

once it started it just wouldnt stop. She scooped up Brennan and her

patient she was just taking back and went back to the room while I ran

to the bathroom to cry for no reason. I finally calmed down and went

back to get him, and he didnt want to leave.

It was so totally humiliating.

I am feeling like a dismal failure in homeschooling him this yr. I

wanted to do pre-K with him, bought the books, paper and even a little

backpack to keep his things in and he was so excited. The problem is

turning out to be that while he is very bright and curious to learn,

he has an attention span of about a milisecond--maybe not even that

long. I cant figure out any way to keep him still long enough to do

anything with him. I am finding I have patience thread about the same

amount of time. He WANTS so badly to go to school. He WANTS to badly

to learn. I cant figure out how to teach him. He used to love to go to

speech therapy, he felt like that was his little school of his own,

and he misses it. He is so isolated. Now I am thinking, though I am

not overly impressed with our local district, I should look into

seeing if they will send out a homebound teacher for him a couple days

a week. I dont know if they will dothat for his age, since he isnt kdg

age yet. And then if we can do that, its more pressure on me, bc I

cant seem to keep my house straight no matter how hard I try, as I am

so busy with the kids, their illnesses, appts, my own illnesses,

appts, the older kids school..............this whole thing feels

hopeless. What he really wants is to be with other kids, but his ID dr

and I want him home at least one more yr so he can have a full yr of

IVIG before putting him in a classroom setting. I want these things

for him---he is sick and tired of being at home or at the drs. I just

feel like I am failing him,seriously.

I HATE what this disease is doing to our family. I HATE what PID does

to my kids. I WANT it to just go away and leave us alone, though I

know how stupid that sounds.

and I am STILL crying and I dont even know why.

And Brennan is still sleeping on the couch, coughing his head

off.........

I feel so frustrated.

valarie

[Guest guest]

In a message dated 9/6/2006 3:38:11 P.M. Eastern Daylight Time,

LLadden@... writes:

I was in your position last week and cried for 2 days. You are tired of

trying to give your child the most enjoyable life possible, which is

nearly impossible when you LIVE in doctor's offices, cringe every time

you squeeze some money together to put gas in the car to get there, give

your child endless meds, inspect their skin,

I am there with you two! I have been a total wreck! Here is my daughter with

CVID, and Paroxysmal Dystonia. It's like lighting striking twice, right?

Now trying to figure out what is causing her hives and angioedema! This will be

a third something wrong with her! Driving over an hour every week to see her

rheumy and her immune while they try to figure this out. We are going to the

rheumy tomorrow.

She is 15 years old, she takes all this so well, it's just hard to believe

how well she takes it!!!

I feel so alone in all this, abandon. Like no one could ever understand how

I feel, nor do they want to. You find out who your friends are that's for

sure. I feel bitter toward the world and I don't like that feeling.

Janet, mom to Brittany CVID age 15

[Guest guest]

In a message dated 9/6/2006 10:42:41 P.M. Eastern Daylight Time,

osdbmom@... writes:

After a 4 hr weeping session, I did find that our local school will

come out for one day each week and work with him, fun stuff, learning

games, etc. Twice a month, health permitting, there are group

classes--optional. 4-5 times a yr there are field trips. This sounds

perfect for us......something for him to look forward to....and to

give me a little bit of a break......

That's great! Don't feel bad we all need a break. It will make you feel so

much better. :-)

Janet, mom to Brittany CVID age 15

[Guest guest]

" I HATE what this disease is doing to our family. I HATE what PID does to my

kids. I WANT it to just go away and leave us alone "

Valarie,

My heart goes out to you. What an awful day! Please know that you are not

alone in this -- we are here for you and can empathize.

Keep reaching out to those that can support you.

Sending hugs and blessings,

mom to CVIDer

[Guest guest]

Thanks, guys. I needed that.

After a 4 hr weeping session, I did find that our local school will

come out for one day each week and work with him, fun stuff, learning

games, etc. Twice a month, health permitting, there are group

classes--optional. 4-5 times a yr there are field trips. This sounds

perfect for us......something for him to look forward to....and to

give me a little bit of a break..........this sounds awful, but I

LOVED speech therapy for that very reason. Twice a week, for one hr,

I could sit in the waiting room and read, or sew, or just sit and

stare at the window. It was lovely!!LOL

I am not aware of anything in MI that would do a respite deal for

us---usually I think that is only for very disabled children, like on

a vent or feeding tube. We " only " have 3 kids with CVID, all 4 have

severe asthma, 1 has tracheobroncomalacia, 1 has

tracheobroncholaryngomalacia, and two have food allergies.

yup.......thats ALL we have. I dont know why I stress about it.

If I had the money, I have considered asking one of our pharmicists to

babysit once in a while.......at least they know the meds!!LOL

valarie

[Guest guest]

valarie- just wanted to let you know I am thinking

about you...Hoping things are looking up...email me if

you need to.

~~

> nervous breakdown

>

>

>

> I need to rant.I'm definitely falling apart.

> I went to a new dr today, the dr who was supposed to

> help me figure

> out, besides the hiatal hernia, what on earth is

> wrong with my stomach

> and the pain and the vomiting. I had to take Brennan

> with me, bc where

> else is he going to go? I get there and there is a

> sign on the office

> door saying no children are allowed in the office.

> Like they couldnt

> call me and tell me that before I drove 40 minutes

> to get there? and

> then after I filled out the paperwork, the

> receptionist tells me that

> since another dr in the practice(I never knew they

> were in practice

> together) had scoped me this summer, I wasnt allowed

> to switch drs. I

> told I couldnt come back for another appt, I

> scheduled this one around

> my kids appts, and, really, I dont have the gas

> money to drive

> aaaaaaaallllllllllll the way there again, to be

> honest. She went back

> and talked to the dr, and said the partner would see

> me after all. So

> I waited----for TWO HOURS--with Brennan in an office

> with no toys or

> anything for him to do, watching as he ran around

> how his nose is

> starting to run and he is getting that barky cough

> again, and dark

> circles under his eyes. My stomach dropped, thinking

> of him getting

> sick. Finally the dr calls me back, acts irritated

> that I didnt leave

> my 4 yr old alone in the waiting room, sits down,

> opens my file, and

> states he refuses to see me, based on the ethical

> " wrongness " of

> treating one of his partners patients, when the

> other guy had scoped

> me first. He got up and left the room. I left that

> office so angry I

> was shaking.

> Around the corner from this office is Brennans

> former speech therapy

> building. He saw it and started to cry that he

> missed his SLP, and

> wished he could see her again. So I pulled in,

> thinking maybe she had

> some free time and could talk to him a minute and he

> would calm down.

> We get up there, she comes out to see him, and I

> looked at her and

> just started bawling. For no reason. And I couldnt

> stop. Right there,

> in the middle of the waiting area, with all these

> other people there,

> and its not like I was overly close with her, but

> for some reason,

> once it started it just wouldnt stop. She scooped up

> Brennan and her

> patient she was just taking back and went back to

> the room while I ran

> to the bathroom to cry for no reason. I finally

> calmed down and went

> back to get him, and he didnt want to leave.

> It was so totally humiliating.

> I am feeling like a dismal failure in homeschooling

> him this yr. I

> wanted to do pre-K with him, bought the books, paper

> and even a little

> backpack to keep his things in and he was so

> excited. The problem is

> turning out to be that while he is very bright and

> curious to learn,

> he has an attention span of about a

> milisecond--maybe not even that

> long. I cant figure out any way to keep him still

> long enough to do

> anything with him. I am finding I have patience

> thread about the same

> amount of time. He WANTS so badly to go to school.

> He WANTS to badly

> to learn. I cant figure out how to teach him. He

> used to love to go to

> speech therapy, he felt like that was his little

> school of his own,

> and he misses it. He is so isolated. Now I am

> thinking, though I am

> not overly impressed with our local district, I

> should look into

> seeing if they will send out a homebound teacher for

> him a couple days

> a week. I dont know if they will dothat for his age,

> since he isnt kdg

> age yet. And then if we can do that, its more

> pressure on me, bc I

> cant seem to keep my house straight no matter how

> hard I try, as I am

> so busy with the kids, their illnesses, appts, my

> own illnesses,

> appts, the older kids school..............this whole

> thing feels

> hopeless. What he really wants is to be with other

> kids, but his ID dr

> and I want him home at least one more yr so he can

> have a full yr of

> IVIG before putting him in a classroom setting. I

> want these things

> for him---he is sick and tired of being at home or

> at the drs. I just

> feel like I am failing him,seriously.

> I HATE what this disease is doing to our family. I

> HATE what PID does

> to my kids. I WANT it to just go away and leave us

> alone, though I

> know how stupid that sounds.

> and I am STILL crying and I dont even know why.

> And Brennan is still sleeping on the couch, coughing

> his head

> off.........

> I feel so frustrated.

>

> valarie

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> This forum is open to parents and caregivers of

> children diagnosed with a Primary Immune Deficiency.

> Opinions or medical advice stated here are the sole

> responsibility of the poster and should not be taken

> as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

>

=== message truncated ===

__________________________________________________

[Guest guest]

I know I am new but I wanted to tell you I was thinking of you and

that I have been there SO many times. My son is 5 and he can't go to

kindergarten even though his brother is in school and it is very

hard, keep your chin up and remember you are just protecting your

son. Take a break, relax, and don't let others make you feel crazy,

I would love to see anyone of them walk in your shoes even if only

for a minute. Good luck if you need anything feel free to e-mail me.

Crystal, mom to;

Gavin age 7, PDD-NOS, Mitochnodrial Disease, asthma, allergies,

microcephlic, staticencephalopathy, epilepsy, sleep disorder, etc.

Gage age 5 1/2, CVID, high functioning autism, mitochondrial disease,

kidney reflex, atypical arthritis, lung disease, eocenaphilic gastro-

esophagial-colitis, digestive dismotility, GERD, poss celiac's

(waiting for byopsy), anemia, etc.

>

> I need to rant.I'm definitely falling apart.

> I went to a new dr today, the dr who was supposed to help me figure

> out, besides the hiatal hernia, what on earth is wrong with my

stomach

> and the pain and the vomiting. I had to take Brennan with me, bc

where

> else is he going to go? I get there and there is a sign on the

office

> door saying no children are allowed in the office. Like they couldnt

> call me and tell me that before I drove 40 minutes to get there?

and

> then after I filled out the paperwork, the receptionist tells me

that

> since another dr in the practice(I never knew they were in practice

> together) had scoped me this summer, I wasnt allowed to switch drs.

I

> told I couldnt come back for another appt, I scheduled this one

around

> my kids appts, and, really, I dont have the gas money to drive

> aaaaaaaallllllllllll the way there again, to be honest. She went

back

> and talked to the dr, and said the partner would see me after all.

So

> I waited----for TWO HOURS--with Brennan in an office with no toys or

> anything for him to do, watching as he ran around how his nose is

> starting to run and he is getting that barky cough again, and dark

> circles under his eyes. My stomach dropped, thinking of him getting

> sick. Finally the dr calls me back, acts irritated that I didnt

leave

> my 4 yr old alone in the waiting room, sits down, opens my file, and

> states he refuses to see me, based on the ethical " wrongness " of

> treating one of his partners patients, when the other guy had scoped

> me first. He got up and left the room. I left that office so angry I

> was shaking.

> Around the corner from this office is Brennans former speech therapy

> building. He saw it and started to cry that he missed his SLP, and

> wished he could see her again. So I pulled in, thinking maybe she

had

> some free time and could talk to him a minute and he would calm

down.

> We get up there, she comes out to see him, and I looked at her and

> just started bawling. For no reason. And I couldnt stop. Right

there,

> in the middle of the waiting area, with all these other people

there,

> and its not like I was overly close with her, but for some reason,

> once it started it just wouldnt stop. She scooped up Brennan and her

> patient she was just taking back and went back to the room while I

ran

> to the bathroom to cry for no reason. I finally calmed down and went

> back to get him, and he didnt want to leave.

> It was so totally humiliating.

> I am feeling like a dismal failure in homeschooling him this yr. I

> wanted to do pre-K with him, bought the books, paper and even a

little

> backpack to keep his things in and he was so excited. The problem is

> turning out to be that while he is very bright and curious to learn,

> he has an attention span of about a milisecond--maybe not even that

> long. I cant figure out any way to keep him still long enough to do

> anything with him. I am finding I have patience thread about the

same

> amount of time. He WANTS so badly to go to school. He WANTS to badly

> to learn. I cant figure out how to teach him. He used to love to go

to

> speech therapy, he felt like that was his little school of his own,

> and he misses it. He is so isolated. Now I am thinking, though I am

> not overly impressed with our local district, I should look into

> seeing if they will send out a homebound teacher for him a couple

days

> a week. I dont know if they will dothat for his age, since he isnt

kdg

> age yet. And then if we can do that, its more pressure on me, bc I

> cant seem to keep my house straight no matter how hard I try, as I

am

> so busy with the kids, their illnesses, appts, my own illnesses,

> appts, the older kids school..............this whole thing feels

> hopeless. What he really wants is to be with other kids, but his ID

dr

> and I want him home at least one more yr so he can have a full yr of

> IVIG before putting him in a classroom setting. I want these things

> for him---he is sick and tired of being at home or at the drs. I

just

> feel like I am failing him,seriously.

> I HATE what this disease is doing to our family. I HATE what PID

does

> to my kids. I WANT it to just go away and leave us alone, though I

> know how stupid that sounds.

> and I am STILL crying and I dont even know why.

> And Brennan is still sleeping on the couch, coughing his head

off.........

> I feel so frustrated.

>

> valarie

>

[Guest guest]

-

.....I have been meaning to catch up with you....we are

busy too. Gwynn started kindergarten last week and

after only 4 days is already out sick suprise

suprise....I am dealing with 4 docs who don't agree

with each other whatsoever and caring for my ill

father.....life is so fun.

on an up note we took a little money that we could not

afford to spend and took the kids to a resort for

labor day weekend....we have been married 8 years and

this was our first vacation ever....IT WAS GREAT! I

feel bad because we are so far behind but life was

really getting us down so I decided that the endless

stack of bills is not going anywhere so what the heck!

Are you coming to the cities soon?

How are the kids, job, inlaws?

~~

--- lmschatz@... wrote:

> ,

>

> How are you???

>

> We're busy....

>

> , Thinking of you...I have been there of

> late also...trying to juggle

> all this along with issues between the inlaws and at

> work. Know you can vent

> here and we all understand.

>

> S...

>

> I'm at work..

> lschatz@... if you want to " talk " .

>

> S.

> Quoting sarah larson <mom2gwynn@...>:

>

> > valarie- just wanted to let you know I am

> thinking

> > about you...Hoping things are looking up...email

> me if

> > you need to.

> > ~~

> >

> >

> > > nervous breakdown

> > >

> > >

> > >

> > > I need to rant.I'm definitely falling apart.

> > > I went to a new dr today, the dr who was

> supposed to

> > > help me figure

> > > out, besides the hiatal hernia, what on earth is

> > > wrong with my stomach

> > > and the pain and the vomiting. I had to take

> Brennan

> > > with me, bc where

> > > else is he going to go? I get there and there is

> a

> > > sign on the office

> > > door saying no children are allowed in the

> office.

> > > Like they couldnt

> > > call me and tell me that before I drove 40

> minutes

> > > to get there? and

> > > then after I filled out the paperwork, the

> > > receptionist tells me that

> > > since another dr in the practice(I never knew

> they

> > > were in practice

> > > together) had scoped me this summer, I wasnt

> allowed

> > > to switch drs. I

> > > told I couldnt come back for another appt, I

> > > scheduled this one around

> > > my kids appts, and, really, I dont have the gas

> > > money to drive

> > > aaaaaaaallllllllllll the way there again, to be

> > > honest. She went back

> > > and talked to the dr, and said the partner would

> see

> > > me after all. So

> > > I waited----for TWO HOURS--with Brennan in an

> office

> > > with no toys or

> > > anything for him to do, watching as he ran

> around

> > > how his nose is

> > > starting to run and he is getting that barky

> cough

> > > again, and dark

> > > circles under his eyes. My stomach dropped,

> thinking

> > > of him getting

> > > sick. Finally the dr calls me back, acts

> irritated

> > > that I didnt leave

> > > my 4 yr old alone in the waiting room, sits

> down,

> > > opens my file, and

> > > states he refuses to see me, based on the

> ethical

> > > " wrongness " of

> > > treating one of his partners patients, when the

> > > other guy had scoped

> > > me first. He got up and left the room. I left

> that

> > > office so angry I

> > > was shaking.

> > > Around the corner from this office is Brennans

> > > former speech therapy

> > > building. He saw it and started to cry that he

> > > missed his SLP, and

> > > wished he could see her again. So I pulled in,

> > > thinking maybe she had

> > > some free time and could talk to him a minute

> and he

> > > would calm down.

> > > We get up there, she comes out to see him, and I

> > > looked at her and

> > > just started bawling. For no reason. And I

> couldnt

> > > stop. Right there,

> > > in the middle of the waiting area, with all

> these

> > > other people there,

> > > and its not like I was overly close with her,

> but

> > > for some reason,

> > > once it started it just wouldnt stop. She

> scooped up

> > > Brennan and her

> > > patient she was just taking back and went back

> to

> > > the room while I ran

> > > to the bathroom to cry for no reason. I finally

> > > calmed down and went

> > > back to get him, and he didnt want to leave.

> > > It was so totally humiliating.

> > > I am feeling like a dismal failure in

> homeschooling

> > > him this yr. I

> > > wanted to do pre-K with him, bought the books,

> paper

> > > and even a little

> > > backpack to keep his things in and he was so

> > > excited. The problem is

> > > turning out to be that while he is very bright

> and

> > > curious to learn,

> > > he has an attention span of about a

> > > milisecond--maybe not even that

> > > long. I cant figure out any way to keep him

> still

> > > long enough to do

> > > anything with him. I am finding I have patience

> > > thread about the same

> > > amount of time. He WANTS so badly to go to

> school.

> > > He WANTS to badly

> > > to learn. I cant figure out how to teach him. He

> > > used to love to go to

> > > speech therapy, he felt like that was his little

> > > school of his own,

> > > and he misses it. He is so isolated. Now I am

> > > thinking, though I am

> > > not overly impressed with our local district, I

> > > should look into

> > > seeing if they will send out a homebound teacher

> for

> > > him a couple days

> > > a week. I dont know if they will dothat for his

> age,

> > > since he isnt kdg

> > > age yet. And then if we can do that, its more

> > > pressure on me, bc I

> > > cant seem to keep my house straight no matter

> how

> > > hard I try, as I am

> > > so busy with the kids, their illnesses, appts,

> my

> > > own illnesses,

> > > appts, the older kids school..............this

> whole

> > > thing feels

> > > hopeless. What he really wants is to be with

> other

> > > kids, but his ID dr

> > > and I want him home at least one more yr so he

> can

> > > have a full yr of

> > > IVIG before putting him in a classroom setting.

> I

> > > want these things

> > > for him---he is sick and tired of being at home

> or

> > > at the drs. I just

> > > feel like I am failing him,seriously.

> > > I HATE what this disease is doing to our family.

> I

> > > HATE what PID does

> > > to my kids. I WANT it to just go away and leave

> us

> > > alone, though I

> > > know how stupid that sounds.

> > > and I am STILL crying and I dont even know why.

> > > And Brennan is still sleeping on the couch,

> coughing

> > > his head

> > > off.........

>

=== message truncated ===

__________________________________________________