venting

[Guest guest]

Kim , I'm sorry you are having such a rough time with the insurance . It makes

you so mad that you cant find anyone to even tell you what to do about the

situation. I hope you find someone that sticks their neck out for ya.

As far as the bills here...most would pass out by just recieving them. ie.. Josh

was getting 2 daily hepprin injections for a whopping cost of $5,000 a month.

Insurance keeps sending me the bills. Call it juvenile or what ever, but I

simply toss them in the garbage and say, what are they going to do take my baby!

I sleep peace full everynite with that thought.

Ofcourse I dont recommend this to anyone, but it works for me.

Take Care,

Stein......mom to CF (1 yr) & Tori wo/CF (3 1/2 yr)

venting

edi,

my son jason (now 15mnths) was diag. in 9-2000) when he went in for

his follow up checkup after getting out the hospital, they said my

son kalvin (then 7) needed to be tested to rule him out haveing it.

he did not have cf! but, now 8months later, bluecross of michigan

won't pay the bill. they say it was not billed as a medical necessinet

( sp??)

so the hospital says they will take me to a collection agency ( for

$282.00) i have talked to everyone at the hosptial and blue cross/

get this i asked what is the correct code to bill it under, they

would'nt tell me! well i take jason back to the doctors and i guess

i'll bring it up again.

sorry for going off i just hate getting all the bills in the mail,!!!

kimberly jason, 15 months w/cf and kalvin 8 w/.out

.

> As to whether parents are being tested...YEAH RIGHT! My doctor

went into a

> long explaination about how people with CF are diagnosed at birth

and the

> odds that I would have it are millions to one. I am too old (43)

to have

> CF!!! If my regular Dr. doesn't refer me, then I have to pay for

the tests

> due to HMO policy. Right now, I feel that the money is better

spent dealing

> with kids' issues. It's been really interesting for my extended

family in

> regards to being tested. None of the pediatricians in our families

felt it

> was necessary to test first cousins even though two families were

recently

> diagnosed with CF children. It seems that the more children in the

family

> with CF, the less chance (millions to one) there is that the others

have it.

> It doesn't make sense to me. Oh well, at least my peditrician did

listen

> when I insisted that my boys be tested to see if they were

carriers. He

> finally agreed though did say it may not be covered. I don't think

we would

> have found out they have CF if I had not insisted and said I would

pay for

> the tests myself. Is this the normal attitude or is this just an

after

> effect of HMO's? Anyone else deal with this?

> Edi

>

>

>

[Guest guest]

How many kids do you have Kim? Could you borrow a few extra toddlers? When

I was pregnant last year our insurance was having difficulty in

" understanding " why I needed to have some blood work done, and they

considered it unecessary. After a huge phone battle with a very nice lady I

finally asked to speak to her supervisor. I had been on the phone two hours

by then and by then 4, 3, and 2 year old were wound up and wanted mommy off

of the phone now. They were really being loud. I finally told the

supervisor that if it was going to take me coming in in person I would be

happy to do so. But he needed to be aware that I had 3 children 4 and under

and that it was a two hour drive to his office. I said we could get there

by 8:00 and would be happy to camp in his office all day long until we got

this matter resolved. He started back tracking and I continued to tell him

that lunch would be no problem. I could bring a pic nic and I was sure that

my kids would love to eat pb & j sandwiches, cheetos, pudding and koolaid in

his nice office. You know all of a sudden my blood work was approved. Hit

'em where it hurts. They just might decide it's easier to comply than to

fight. :-) He he he.......

Dawn

venting

>

>

> edi,

>

>

> my son jason (now 15mnths) was diag. in 9-2000) when he went in for

> his follow up checkup after getting out the hospital, they said my

> son kalvin (then 7) needed to be tested to rule him out haveing it.

> he did not have cf! but, now 8months later, bluecross of michigan

> won't pay the bill. they say it was not billed as a medical necessinet

> ( sp??)

> so the hospital says they will take me to a collection agency ( for

> $282.00) i have talked to everyone at the hosptial and blue cross/

> get this i asked what is the correct code to bill it under, they

> would'nt tell me! well i take jason back to the doctors and i guess

> i'll bring it up again.

>

> sorry for going off i just hate getting all the bills in the mail,!!!

>

> kimberly jason, 15 months w/cf and kalvin 8 w/.out

> .

> > As to whether parents are being tested...YEAH RIGHT! My doctor

> went into a

> > long explaination about how people with CF are diagnosed at birth

> and the

> > odds that I would have it are millions to one. I am too old (43)

> to have

> > CF!!! If my regular Dr. doesn't refer me, then I have to pay for

> the tests

> > due to HMO policy. Right now, I feel that the money is better

> spent dealing

> > with kids' issues. It's been really interesting for my extended

> family in

> > regards to being tested. None of the pediatricians in our families

> felt it

> > was necessary to test first cousins even though two families were

> recently

> > diagnosed with CF children. It seems that the more children in the

> family

> > with CF, the less chance (millions to one) there is that the others

> have it.

> > It doesn't make sense to me. Oh well, at least my peditrician did

> listen

> > when I insisted that my boys be tested to see if they were

> carriers. He

> > finally agreed though did say it may not be covered. I don't think

> we would

> > have found out they have CF if I had not insisted and said I would

> pay for

> > the tests myself. Is this the normal attitude or is this just an

> after

> > effect of HMO's? Anyone else deal with this?

> > Edi

> >

> >

> >

[Guest guest]

WTG DAWN! Love that approach!

Stein

venting

>

>

> edi,

>

>

> my son jason (now 15mnths) was diag. in 9-2000) when he went in for

> his follow up checkup after getting out the hospital, they said my

> son kalvin (then 7) needed to be tested to rule him out haveing it.

> he did not have cf! but, now 8months later, bluecross of michigan

> won't pay the bill. they say it was not billed as a medical necessinet

> ( sp??)

> so the hospital says they will take me to a collection agency ( for

> $282.00) i have talked to everyone at the hosptial and blue cross/

> get this i asked what is the correct code to bill it under, they

> would'nt tell me! well i take jason back to the doctors and i guess

> i'll bring it up again.

>

> sorry for going off i just hate getting all the bills in the mail,!!!

>

> kimberly jason, 15 months w/cf and kalvin 8 w/.out

> .

> > As to whether parents are being tested...YEAH RIGHT! My doctor

> went into a

> > long explaination about how people with CF are diagnosed at birth

> and the

> > odds that I would have it are millions to one. I am too old (43)

> to have

> > CF!!! If my regular Dr. doesn't refer me, then I have to pay for

> the tests

> > due to HMO policy. Right now, I feel that the money is better

> spent dealing

> > with kids' issues. It's been really interesting for my extended

> family in

> > regards to being tested. None of the pediatricians in our families

> felt it

> > was necessary to test first cousins even though two families were

> recently

> > diagnosed with CF children. It seems that the more children in the

> family

> > with CF, the less chance (millions to one) there is that the others

> have it.

> > It doesn't make sense to me. Oh well, at least my peditrician did

> listen

> > when I insisted that my boys be tested to see if they were

> carriers. He

> > finally agreed though did say it may not be covered. I don't think

> we would

> > have found out they have CF if I had not insisted and said I would

> pay for

> > the tests myself. Is this the normal attitude or is this just an

> after

> > effect of HMO's? Anyone else deal with this?

> > Edi

> >

> >

> >

[Guest guest]

,

I admire that! I wish I could do that, because I am

just the opposite. Everytime I get a bill, my blood

pressure rises, and my husband swears he can see steam

coming out of my ears !! But when you think about it,

you are right. It's not like they would take the kid

away... Lord only knows they WOULDNT want my

demon-spawn!!

B.

>

> " As far as the bills here...most would pass out by

> just recieving them. ie.. Josh was getting 2 daily

> hepprin injections for a whopping cost of $5,000 a

> month. Insurance keeps sending me the bills. Call it

> juvenile or what ever, but I simply toss them in the

> garbage and say, what are they going to do take my

> baby! I sleep peace full everynite with that

> thought. "

__________________________________________________

[Guest guest]

Hi there,

this made me want to cry not from sadness but from

anger (for some reason when I am really angry I tend

to cry, which is very irritating because then I look

like a sappy female but it is actually the anger,

probably my way of avoiding hitting someone lol)

any how I do understand your frustration and anger and

fear. you just want someone to do something to find

out WHY! but I am gonna add a little vent too tho

The other day my boss who is a friend also I know him

quite well, and he me (friends only) says to me after

about 3 yrs of seeing him and talking to him almost on

a daily basis he says to me " so Does have

Cystic fibrosis? " its making me laugh right now but it

was a little rustrating then. I dont go around talking

about it all the time but I have talked to him about

it and the insurance woes dozens of times I am sure in

three years. and one other thing people who are really

close who will ask you a question then you start to

answer and they look like they no longer want to know

obviously fear but then DONT ASK! oh and the ever

famous person who is really close

(grandparent,aunt,Uncle etc.) who dont get it period

ok thats all

Mommy Of The Great

--- Lee C Langill wrote:

> I am in a venting kind of mood also. I appreciate

> having a place to do

> it. Mallory was scheduled for surgery on Monday

> July 23 for a g-tube, a

> second bronch (a second attempt to clear out a

> partially collapsed lung),

> and an endoscopy. Today at her clinic appnt the Dr

> asked if we would

> consider coming in over the weekend so they could

> get an IV in her and

> start her on antibiotics, etc. - a jump start

> before the surgery. That

> was enough to get me depressed - who wants to spend

> a couple of extra

> days in the hospital? But just a few hours after we

> had gotten home -

> after Mallory had thrown up for the third time today

> - I realized that

> she had not been able to keep much of anything down.

> Yesterday was an

> awful day as far as throwing up goes too. She has

> been throwing up a lot

> more these last couple of weeks. She even lost a

> little weight from her

> last clinic appnt a month ago. I started to get

> kind of panicky about

> this and before long I went from being depressed

> about going in to the

> hospital a few days early to wanting to know if we

> should come in today

> or tomorrow! Fears of dehydration or something kind

> of intestinal

> blockage, etc. In the middle of phone calls to the

> hospital, I get one

> back from the surgeon who is placing the g-tube.

> Now he is delaying it

> until July 27. I guess he will be out of town now

> on the originally

> scheduled date. So instead of taking some comfort

> in having the

> professionals around to watch her and see if

> anything is really wrong, I

> am stuck trying to determine this on my own for

> another week and a half.

> Maybe you all are better at this than I am, maybe I

> will improve in time,

> but I hate this feeling of not knowing what is wrong

> - or if anything is

> wrong! Am I just being paranoid or is this really

> something to take

> seriously? It's the uncertainty that makes me

> crazy.

> I'm not even sure if this makes much sense to anyone

> else. But it feels

> a little better to get it off my chest. Thanks for

> letting me.

>

__________________________________________________

[Guest guest]

LEE,

I HOPE EVERYTHING WORKS OUT OK!

GOODLIUCK

KIMBERLY

> I am in a venting kind of mood also. I appreciate having a place

to do

> it. Mallory was scheduled for surgery on Monday July 23 for a g-

tube, a

> second bronch (a second attempt to clear out a partially collapsed

lung),

> and an endoscopy. Today at her clinic appnt the Dr asked if we

would

> consider coming in over the weekend so they could get an IV in her

and

> start her on antibiotics, etc. - a jump start before the surgery.

That

> was enough to get me depressed - who wants to spend a couple of

extra

> days in the hospital? But just a few hours after we had gotten

home -

> after Mallory had thrown up for the third time today - I realized

that

> she had not been able to keep much of anything down. Yesterday was

an

> awful day as far as throwing up goes too. She has been throwing up

a lot

> more these last couple of weeks. She even lost a little weight

from her

> last clinic appnt a month ago. I started to get kind of panicky

about

> this and before long I went from being depressed about going in to

the

> hospital a few days early to wanting to know if we should come in

today

> or tomorrow! Fears of dehydration or something kind of intestinal

> blockage, etc. In the middle of phone calls to the hospital, I get

one

> back from the surgeon who is placing the g-tube. Now he is

delaying it

> until July 27. I guess he will be out of town now on the originally

> scheduled date. So instead of taking some comfort in having the

> professionals around to watch her and see if anything is really

wrong, I

> am stuck trying to determine this on my own for another week and a

half.

> Maybe you all are better at this than I am, maybe I will improve in

time,

> but I hate this feeling of not knowing what is wrong - or if

anything is

> wrong! Am I just being paranoid or is this really something to take

> seriously? It's the uncertainty that makes me crazy.

> I'm not even sure if this makes much sense to anyone else. But it

feels

> a little better to get it off my chest. Thanks for letting me.

[Guest guest]

Rosemary, sounds like you're having a crappy time right now! I've been where

you are (kind of--I only have one with CF--the fact that you have three just

amazes me that you are handling it so well!). BUT, every single one of those

phrases that your kids say have been done in my house too. And if we are a good

sounding board for you, then we have done our job as friends!

, mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7)

smichelle15@...

Re: VENTING

It seems like there is an influx of new people. Wow. Kind of scary we're

all in the same boat.

CF is very isolating for me. I no of no one with it so I value you guys and

your feedback.

Question: What do you do when " Chronic life " gets to you? Its summer and I

am frustrated, a tad , by the treatments and our rigid lifestyle. We are on

day 2 of tobi. (11) not to being to compliant (as usual) .

My mother was ill 9 yrs. before she died, my father in remission from

leukemia - 3 yrs now! I feel as though if you look up chronic you will find

my picture. I am not sleeping good back problems - I go for CAT Scan & MRI

in two weeks.

All I want to do is enjoy life and be happy. Is that to much to ask for???

Instead, its breathe dammit -

THE KIDS:

your so mean - " you don't know what its like to have CF " " I hate this

medicine " " when do we get to stop it " " you don't have breathing " " I want a

puppy " " I spilled my grape juice "

" I hate rocket power " " she called me a idiot "

Ah, to vent is wonderful. Thanks for listening to me ramble.

Rosemary in New York with three children with CF - they are 11, 8.6,

4.8........

I coined the phrase " BREATHE DAMMIT "

I have the luck of the Irish....

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Hey Ro,

I did not know you lived at my house!!! Must be 11 yr old CF girls! That is

Moe's biggest line! You don't get it because you don't have it! And we also

have our share of fights about TV around here especially the last few days

with this God Awful HEAT! I will not let them go out mid day! I cannot wait

until Sept.!!!!!!

Oh off the subject we were going down to Sag Harbor on the 15th of July and

of course we needed a potty break and a diaper change and we stopped in your

town Rosemary!!! Of course we all yelled for you but I guess you couldn't

hear us!!! but I was thinking of you bud! And by the way we are going back

on the 11th of Aug. (before Jack's surgery) so let me know if you can get to

your aunts. All of Moe's cultures from her sinus surgery were clean. Only

Staph! Nothing else! How bout you?

Meg

Mom of 3

Moe 10yowcf, Kate 5yowocf & Jack infant wcf

[Guest guest]

,

I'm so sorry for your frustrations and feelings of despair. I have days where I question myself and my purpose as well. I read a great book that really helped me put my life into perspective called "The Purpose Driven Life." It's by Rick Warren. If you haven't read it yet I would highly reccomend it. You can order it from Amazon and not even have to leave your house. Hope today looks a little brighter for you. You're in my thoughts. God Bless,

[Guest guest]

I'm so sick of all this!!! SICK , SICK , SICK!!!!!!! I'm sick of

crashing, sick of trying to figure out what I should do , what I

should eat, taking all this medication, doctors or lack of them,

Most of all I'm sick of resting! The world is passing me by! I

can't just stay in the bed all day every day. I'm not sleepy! I

don't want to rest, I'm sick of it!!!!!

Recently someone is sending me to a day of beauty at a salon which

once a month give this to women who has breast cancer. I get help

and special treatment because I had cancer, but what about an

undiagnosed illness. who cares!

I've had chronic fatiague all my life and have rested all my life.

I'm 51 and my best years are gone and I'm still just sitting here.

There are no more doctors to see or test to do because I've had them

all! No doctors want to even give me the time of day, because I've

seen to many and when they hear that they say, well you 've seem

everybody.

So where does that leave me. Just to sit and wait while I slowly

wither away!

I'm so sorry to vent this way, but I feel very lost today, I've tried

so hard to get help and to help myself, and now I have to accept the

fact that this is it. I'm having a hard time accepting this.

Please pray for me today,

[Guest guest]

-Hi tanya.,ditto with all that for me too. It is sooo frustrating

having these diseases- so vague and ill defined; so hard to diagnose

and understand and soo debilitating that it deprives us of a

" normal " life. Although what is normal anyway? i get a lot of

satisfaction from my crafts and reading. I always have one fun book

and one serious book on the go. I have read alot of religion (and I

mean all the rleigions), philosophy, history etc. and I find it helps

me keep perspective. My particular favourite writer is ph

, known as the world mythology expert, but really his books

incompass the whole gamit of philosophy, mythology, religions,

history, archeology , history literature. Great and very satisfying

books that i find rise me above myself. not really a solution to our

problems, but at least it helps me really appreciate the life I do

have. Hope you feel better soon, Celia (PS I am 52, so close to you in

age)

<tanya2727@y...> wrote:

> I'm so sick of all this!!! SICK , SICK , SICK!!!!!!! I'm sick of

> crashing, sick of trying to figure out what I should do , what I

> should eat, taking all this medication, doctors or lack of them,

>

>

> Most of all I'm sick of resting! The world is passing me by! I

> can't just stay in the bed all day every day. I'm not sleepy! I

> don't want to rest, I'm sick of it!!!!!

>

> Recently someone is sending me to a day of beauty at a salon which

> once a month give this to women who has breast cancer. I get help

> and special treatment because I had cancer, but what about an

> undiagnosed illness. who cares!

>

> I've had chronic fatiague all my life and have rested all my life.

> I'm 51 and my best years are gone and I'm still just sitting here.

>

> There are no more doctors to see or test to do because I've had them

> all! No doctors want to even give me the time of day, because I've

> seen to many and when they hear that they say, well you 've seem

> everybody.

>

> So where does that leave me. Just to sit and wait while I slowly

> wither away!

>

> I'm so sorry to vent this way, but I feel very lost today, I've

tried

> so hard to get help and to help myself, and now I have to accept the

> fact that this is it. I'm having a hard time accepting this.

>

> Please pray for me today,

>

>

[Guest guest]

,

My thoughts are with you, many doctors are full of s**t, IMHO, but

the worst part is that the bad ones make us think all doctors are

bad. Unfortunately we have to be our own guinea pigs, and keep

trying supplements.

I think the only reason I continue to go to the MDA clinic and other

doctors is so I can help my kids with their issues. Otherwise I'd

probably give up on doctors too, although the doctor in Phila. (I see

her in town) is quite sympathetic and also deals with ALS

patients (very sad).

There also seems to be neurotransmitter problems in a lot of us, so

symptoms of depression aren't unusual. But I think relieving your

stress of no diagnosis would help tremendously more than prescribing

medications for depression.

Take care,

RH

> I'm so sick of all this!!! SICK , SICK , SICK!!!!!!! I'm sick of

> crashing, sick of trying to figure out what I should do , what I

> should eat, taking all this medication, doctors or lack of them,

>

>

> Most of all I'm sick of resting! The world is passing me by! I

> can't just stay in the bed all day every day. I'm not sleepy! I

> don't want to rest, I'm sick of it!!!!!

>

> Recently someone is sending me to a day of beauty at a salon which

> once a month give this to women who has breast cancer. I get help

> and special treatment because I had cancer, but what about an

> undiagnosed illness. who cares!

>

> I've had chronic fatiague all my life and have rested all my

life.

> I'm 51 and my best years are gone and I'm still just sitting here.

>

> There are no more doctors to see or test to do because I've had

them

> all! No doctors want to even give me the time of day, because I've

> seen to many and when they hear that they say, well you 've seem

> everybody.

>

> So where does that leave me. Just to sit and wait while I slowly

> wither away!

>

> I'm so sorry to vent this way, but I feel very lost today, I've

tried

> so hard to get help and to help myself, and now I have to accept

the

> fact that this is it. I'm having a hard time accepting this.

>

> Please pray for me today,

>

>

[Guest guest]

I feel for you as I once felt the same way. I just quit looking and pushing

myself. I am sure there is someone out there to help you as I was helped.

Sometimes it occurs in strange ways. went to her gynocologist who

sent her to a neurologist who happens to be the wife of the neurologist we

see. Of course we took a side trip to a pediatric neuro as our present doc

(who is another Dr. Cohen in personality) was not with MDA.

Go ahead and vent and get angry and cry. Then keep your eyes and ears open

for the special person to arrive in your life. This doctor didn't know about

mito, but has learned for us and it has benefited many others.

laurie

>

> Reply-To:

> Date: Tue, 30 Sep 2003 14:08:42 -0000

> To:

> Subject: venting

>

> I'm so sick of all this!!! SICK , SICK , SICK!!!!!!! I'm sick of

> crashing, sick of trying to figure out what I should do , what I

> should eat, taking all this medication, doctors or lack of them,

>

>

> Most of all I'm sick of resting! The world is passing me by! I

> can't just stay in the bed all day every day. I'm not sleepy! I

> don't want to rest, I'm sick of it!!!!!

>

> Recently someone is sending me to a day of beauty at a salon which

> once a month give this to women who has breast cancer. I get help

> and special treatment because I had cancer, but what about an

> undiagnosed illness. who cares!

>

> I've had chronic fatiague all my life and have rested all my life.

> I'm 51 and my best years are gone and I'm still just sitting here.

>

> There are no more doctors to see or test to do because I've had them

> all! No doctors want to even give me the time of day, because I've

> seen to many and when they hear that they say, well you 've seem

> everybody.

>

> So where does that leave me. Just to sit and wait while I slowly

> wither away!

>

> I'm so sorry to vent this way, but I feel very lost today, I've tried

> so hard to get help and to help myself, and now I have to accept the

> fact that this is it. I'm having a hard time accepting this.

>

> Please pray for me today,

>

>

>

>

>