Re: feeling alone and misunderstood again to the nonasthmatics

[Guest guest]

Hi there

Dont let your parents get you down. I was diagnosed with asthma as a

baby and am 45 now.

As I grew up I found I became more and more allergic to everyday

things, such as melon, celery, beetroot, nuts, Certain food

colourings, grass, pine, disinfectent, cat, horse and many more that

I cant remember. I then developed an anaphalactic reaction to Latex.

Nobody could understand how serious my allergies were and thought I

was attention seeking. It wasnt until I stopped breathing and had to

go onto a life support machine that I was really understood.

I am so fortunate that I receive Xolair as all my allergies are

controlled. I wont eat the things I am allergic to on purpose but

know I dont have to panic if I do by accident.

Why dont you let your mother talk to a professional person such as

your doctor as they may be able to get her to understand.

Hope things get better for you.

Sally

>

>

I am sorry, I need to write here. I feel trapped and noone in my

> immediate world understands

>

> fresh cut grass sets my asthma off. Scented candles. My family has

> expressed nondiscreetly their annoyance of this sensitivity.

>

> I knew my dad was cutting the grass this AM. I had the mask, he

said

> give it up, get real. I knew then, it would be best to leave the

> premises and return later. I did that.

>

> I learned he does not empty the lawnmover bag. Rather has the

blade

> low to the ground so the clippings remain behind.

>

> My mom, she does not have the scented candle but a glade plug in.

My

> eyes itched so badly I wanted to gouge them out.

>

> The rescue inhaler was working OT. I called my dr because I was

> concerned. He said go to the nebulzer. As I was sitting here doing

> the machine my mom comes in to tell me to get real. No one has

> allergies this bad. I moved two years ago and it is impossible to

be

> this allergic. She ordered me to stop all medications. I politely

> told her that she was not an MD, not was she certified in any

field

> of medicine. I added that the fact I am on xolair is to cut down

on

> the meds but right now, the dr's are still working on getting the

> asthma under control. Again. I Was told to give it up, I have had

> asthma since I was 3. I should know and control it by now. It does

> not matter to her that the asthma does not stay the same

>

> I was slashed down, diminished and felt like I know nothing. She

said

> she is placing a call to my dr. She can, but she won't get any

info

> out of him. I am sure she and my dad are concerned, they just

express

> it in a different manner.

>

> I more or less gave up stating how I feel, the condition, etc

because

> they do not understand.

>

> It is hard feeling this sick and feeling alone in a house so

large. I

> wish they would hear me and try to understand. But they don't. So,

I

> had to vent here.

>

> THanks for reading

>

[Guest guest]

Ya know what...when she said she was going to place a

call to your doctor, if that had been me I would have

said... " here let me dial the number! " If you have

time, call your doctor and tell him/her EXACTLY what

you have been going through while you are " home. "

Feeling trapped in your surrounding is NOT good.

Anxiety and stress can do a number on your inability

to control your asthma.

I think your parents need a really good verbal

scolding from your doctor. I don't think that they are

" Asthnostics " , however I do think that they are in

" denial " and have some major control issues with you

and your well being. They may act this way because

this is something that they are unable to control and

they are lashing out at you instead of shutting up and

actually helping!

I wish I wasn't a three hour drive & 75 miles north

of NYC/LI because I'd tell you to just pack your bags

and come to my house for the rest of the summer!

on a side note...did you happen to call Dr. Marcus

and talk to him?! If you haven't maybe you should.

He is a really great guy and I think he may be able

to help you in your unfortunate situation.

--- meencantador <meencantador@...> wrote:

> I am sorry, I need to write here. I feel trapped and

> noone in my

> immediate world understands

>

> fresh cut grass sets my asthma off. Scented candles.

> My family has

> expressed nondiscreetly their annoyance of this

> sensitivity.

>

> I knew my dad was cutting the grass this AM. I had

> the mask, he said

> give it up, get real. I knew then, it would be best

> to leave the

> premises and return later. I did that.

>

> I learned he does not empty the lawnmover bag.

> Rather has the blade

> low to the ground so the clippings remain behind.

>

> My mom, she does not have the scented candle but a

> glade plug in. My

> eyes itched so badly I wanted to gouge them out.

>

> The rescue inhaler was working OT. I called my dr

> because I was

> concerned. He said go to the nebulzer. As I was

> sitting here doing

> the machine my mom comes in to tell me to get real.

> No one has

> allergies this bad. I moved two years ago and it is

> impossible to be

> this allergic. She ordered me to stop all

> medications. I politely

> told her that she was not an MD, not was she

> certified in any field

> of medicine. I added that the fact I am on xolair is

> to cut down on

> the meds but right now, the dr's are still working

> on getting the

> asthma under control. Again. I Was told to give it

> up, I have had

> asthma since I was 3. I should know and control it

> by now. It does

> not matter to her that the asthma does not stay the

> same

>

> I was slashed down, diminished and felt like I know

> nothing. She said

> she is placing a call to my dr. She can, but she

> won't get any info

> out of him. I am sure she and my dad are concerned,

> they just express

> it in a different manner.

>

> I more or less gave up stating how I feel, the

> condition, etc because

> they do not understand.

>

> It is hard feeling this sick and feeling alone in a

> house so large. I

> wish they would hear me and try to understand. But

> they don't. So, I

> had to vent here.

>

> THanks for reading

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

I know it is painful to feel like people don't understand. It is hard to

feel alone. And I absolutely know how difficult it is to spend your life

trying to breathe.

I wish none of us had this struggle. But we do.

I have to choose where I am going to be. This is my life, my illness, my

happiness that I am deciding on. If I find some place does not work for me,

I have to choose to be somewhere else. If other people choose to organize

their homemaking, yard work, pets, or personal habits in ways that affect my

asthma, I am responsible for making the most reasonable choice for me. The

fact is, it is not controlling or being in denial if other adults choose not

to arrange their habits around my illness. There are people near and dear

to me that keep dogs. That would be intolearble to me. So instead of me

spending time in their homes, I meet them elsewhere and call lots.

We need to keep a sense of perspective. We are grown-ups with choices and

power. Asthma takes enough from us. We should not let it make us feel

helpless.

I am so sorry that you do not feel the support and help you'd like to from

your parents. That hurts. Perhaps, taking their responses into account,

you can make a different plan for taking care of yourself and having a

relationship with them.

- Gracie

On 6/23/07, K K <grneyyedlady@...> wrote:

>

> Ya know what...when she said she was going to place a

> call to your doctor, if that had been me I would have

> said... " here let me dial the number! " If you have

> time, call your doctor and tell him/her EXACTLY what

> you have been going through while you are " home. "

> Feeling trapped in your surrounding is NOT good.

> Anxiety and stress can do a number on your inability

> to control your asthma.

>

> I think your parents need a really good verbal

> scolding from your doctor. I don't think that they are

> " Asthnostics " , however I do think that they are in

> " denial " and have some major control issues with you

> and your well being. They may act this way because

> this is something that they are unable to control and

> they are lashing out at you instead of shutting up and

> actually helping!

>

> I wish I wasn't a three hour drive & 75 miles north

> of NYC/LI because I'd tell you to just pack your bags

> and come to my house for the rest of the summer!

>

> on a side note...did you happen to call Dr. Marcus

> and talk to him?! If you haven't maybe you should.

> He is a really great guy and I think he may be able

> to help you in your unfortunate situation.

>

> --- meencantador <meencantador@... <meencantador%40>>

> wrote:

>

> > I am sorry, I need to write here. I feel trapped and

> > noone in my

> > immediate world understands

> >

> > fresh cut grass sets my asthma off. Scented candles.

> > My family has

> > expressed nondiscreetly their annoyance of this

> > sensitivity.

> >

> > I knew my dad was cutting the grass this AM. I had

> > the mask, he said

> > give it up, get real. I knew then, it would be best

> > to leave the

> > premises and return later. I did that.

> >

> > I learned he does not empty the lawnmover bag.

> > Rather has the blade

> > low to the ground so the clippings remain behind.

> >

> > My mom, she does not have the scented candle but a

> > glade plug in. My

> > eyes itched so badly I wanted to gouge them out.

> >

> > The rescue inhaler was working OT. I called my dr

> > because I was

> > concerned. He said go to the nebulzer. As I was

> > sitting here doing

> > the machine my mom comes in to tell me to get real.

> > No one has

> > allergies this bad. I moved two years ago and it is

> > impossible to be

> > this allergic. She ordered me to stop all

> > medications. I politely

> > told her that she was not an MD, not was she

> > certified in any field

> > of medicine. I added that the fact I am on xolair is

> > to cut down on

> > the meds but right now, the dr's are still working

> > on getting the

> > asthma under control. Again. I Was told to give it

> > up, I have had

> > asthma since I was 3. I should know and control it

> > by now. It does

> > not matter to her that the asthma does not stay the

> > same

> >

> > I was slashed down, diminished and felt like I know

> > nothing. She said

> > she is placing a call to my dr. She can, but she

> > won't get any info

> > out of him. I am sure she and my dad are concerned,

> > they just express

> > it in a different manner.

> >

> > I more or less gave up stating how I feel, the

> > condition, etc because

> > they do not understand.

> >

> > It is hard feeling this sick and feeling alone in a

> > house so large. I

> > wish they would hear me and try to understand. But

> > they don't. So, I

> > had to vent here.

> >

> > THanks for reading

> >

> >

> >

>

> __________________________________________________________

> Shape in your own image. Join our Network Research Panel today!

> http://surveylink./gmrs/_panel_invite.asp?a=7

>

>

>

[Guest guest]

I agree wholeheartedly--let Mom talk to the doctor. I might even go one further

and suggest that Mom be asked to accompany daughter to the next doctor's

appointment. It is sad when there is little or no understanding of one's

physical condition, especially with asthma.

K K <grneyyedlady@...> wrote:

Ya know what...when she said she was going to place a

call to your doctor, if that had been me I would have

said... " here let me dial the number! " If you have

time, call your doctor and tell him/her EXACTLY what

you have been going through while you are " home. "

Feeling trapped in your surrounding is NOT good.

Anxiety and stress can do a number on your inability

to control your asthma.

I think your parents need a really good verbal

scolding from your doctor. I don't think that they are

" Asthnostics " , however I do think that they are in

" denial " and have some major control issues with you

and your well being. They may act this way because

this is something that they are unable to control and

they are lashing out at you instead of shutting up and

actually helping!

I wish I wasn't a three hour drive & 75 miles north

of NYC/LI because I'd tell you to just pack your bags

and come to my house for the rest of the summer!

on a side note...did you happen to call Dr. Marcus

and talk to him?! If you haven't maybe you should.

He is a really great guy and I think he may be able

to help you in your unfortunate situation.

--- meencantador <meencantador@...> wrote:

> I am sorry, I need to write here. I feel trapped and

> noone in my

> immediate world understands

>

> fresh cut grass sets my asthma off. Scented candles.

> My family has

> expressed nondiscreetly their annoyance of this

> sensitivity.

>

> I knew my dad was cutting the grass this AM. I had

> the mask, he said

> give it up, get real. I knew then, it would be best

> to leave the

> premises and return later. I did that.

>

> I learned he does not empty the lawnmover bag.

> Rather has the blade

> low to the ground so the clippings remain behind.

>

> My mom, she does not have the scented candle but a

> glade plug in. My

> eyes itched so badly I wanted to gouge them out.

>

> The rescue inhaler was working OT. I called my dr

> because I was

> concerned. He said go to the nebulzer. As I was

> sitting here doing

> the machine my mom comes in to tell me to get real.

> No one has

> allergies this bad. I moved two years ago and it is

> impossible to be

> this allergic. She ordered me to stop all

> medications. I politely

> told her that she was not an MD, not was she

> certified in any field

> of medicine. I added that the fact I am on xolair is

> to cut down on

> the meds but right now, the dr's are still working

> on getting the

> asthma under control. Again. I Was told to give it

> up, I have had

> asthma since I was 3. I should know and control it

> by now. It does

> not matter to her that the asthma does not stay the

> same

>

> I was slashed down, diminished and felt like I know

> nothing. She said

> she is placing a call to my dr. She can, but she

> won't get any info

> out of him. I am sure she and my dad are concerned,

> they just express

> it in a different manner.

>

> I more or less gave up stating how I feel, the

> condition, etc because

> they do not understand.

>

> It is hard feeling this sick and feeling alone in a

> house so large. I

> wish they would hear me and try to understand. But

> they don't. So, I

> had to vent here.

>

> THanks for reading

>

>

>

__________________________________________________________

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[Guest guest]

I'm terribly sorry you're continuing to have such a difficult time

with your family's behavior. I strongly agree with everyone who have

suggested that you go ahead and have your mom talk to your doctor,

preferably in person at an office visit with you present. It's very

unlikely that your doctor would be willing to have this conversation

with her by phone and the discussion would be most effective in

person.

I also feel you and your family would benefit tremendously by family

counseling around this issue. You simply will not believe the level

of support this can bring you. Your doctor should be able to

recommend an appropriate counselor or therapist. And if your family

refuses to go, then it would still help you SO much to go yourself.

If finances are an issue, most communities have these services

available on a sliding fee schedule that is based on income. Your

college undoubtedly also offers free counseling to students, although

this wouldn't get you any help this summer while you're home for the

summer.

My heart really goes out to you. Please don't just suffer - do

something proactive to get the help your family and especially you

deserve.

Fran

>

> I am sorry, I need to write here. I feel trapped and noone in my

> immediate world understands

>

> fresh cut grass sets my asthma off. Scented candles. My family has

> expressed nondiscreetly their annoyance of this sensitivity.

>

> I knew my dad was cutting the grass this AM. I had the mask, he

said

> give it up, get real. I knew then, it would be best to leave the

> premises and return later. I did that.

>

> I learned he does not empty the lawnmover bag. Rather has the blade

> low to the ground so the clippings remain behind.

>

> My mom, she does not have the scented candle but a glade plug in.

My

> eyes itched so badly I wanted to gouge them out.

>

> The rescue inhaler was working OT. I called my dr because I was

> concerned. He said go to the nebulzer. As I was sitting here doing

> the machine my mom comes in to tell me to get real. No one has

> allergies this bad. I moved two years ago and it is impossible to

be

> this allergic. She ordered me to stop all medications. I politely

> told her that she was not an MD, not was she certified in any field

> of medicine. I added that the fact I am on xolair is to cut down on

> the meds but right now, the dr's are still working on getting the

> asthma under control. Again. I Was told to give it up, I have had

> asthma since I was 3. I should know and control it by now. It does

> not matter to her that the asthma does not stay the same

>

> I was slashed down, diminished and felt like I know nothing. She

said

> she is placing a call to my dr. She can, but she won't get any info

> out of him. I am sure she and my dad are concerned, they just

express

> it in a different manner.

>

> I more or less gave up stating how I feel, the condition, etc

because

> they do not understand.

>

> It is hard feeling this sick and feeling alone in a house so large.

I

> wish they would hear me and try to understand. But they don't. So,

I

> had to vent here.

>

> THanks for reading

>

[Guest guest]

I am just now catching up on old mail and reading this nearly brings me to

tears. I cant imagine saying that to any of my children suffering like that!

I'm fairly new here so I am not sure of your age! But if your old enough, I'd

honestly be looking for somewhere else to live! When we cut our grass, we

make sure our son is nowhere near. We have removed any and all smell goods

from our home. Spent fortunes on air cleaners etc. I cant imagine using

something and then telling him to " get over it " . I am just floored by this

behavior~

Thinking of you!

Ginger

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