Overwhelmed

[Guest guest]

Karma,

Thanks for the advice on focusing. Good luck in your journey and I wish you the

best.

Amy

[Guest guest]

Thanks Rashelle,

This is all SO true. I have so many positive things happening I don't know why

I'm focusing on the negative! I know that every thing will work out in just the

right way. I'm going to make my 'To Do' list as soon as I finish this message.

I'm also doing some breaths right now and will continue. I promise to have a

happier message to share tomorrow.

Amy )

[Guest guest]

Amy,

I am relating to you more than you can imagine! I am trying to pack my house up too. I don't know where I am moving to, just believing it is going to be someplace in the mountains with lots of rooms and a great view! I am planting my seed of faith by packing the house up as if I know where I am moving too. I have everything from storage piled in the middle of the living room. It is at least 2 feet high and covers every available part of the floor! Why I did this, I have no idea. My mother-in-law will be here next week end to babysit for the weekend. I need to be Cleaning, not what I am doing!

As for being focused. Pick one thing. Set a goal for that one thing. Stay with it until you reach that goal. Don't make your goal so large it is impossible to get there in the amount of time you have. Remember no one can serve two masters. In other words, do one thing at a time and do it well. When we try to do too many things at once, the tendency is to do a very shoddy job at everything. Keep this in mind..... Keep thing simple.

~Karma

Overwhelmed

From: pgmr1@... Hi everyone,I hate to be such a downer, but I'm totally overwhelmed! We have been in the process of having our first home built since August. They finally started construction in December and now the end is close. We are scheduled for our walk through this Thursday and scheduled to close on March 29th. My oldest son's 4th birthday is March 27th and we will be having a party for him at our old home on March 25th. We have a lot of old things that we need to get rid of, which I would like to do in a garage sale. I'm also working on a 'hot' project here at work that is really visable to all of management. My husband works a lot of hours and hasn't been around much lately. We also have a 15 month old that is at a wonderful curious stage so I'm constantly pulling him from danger as well as a 3 month old puppy! It's like I've got so much going on I'm not productive at anything. I can't concentrate at work (proof is this email when I should be working), I haven't packed one box or prepared the ga!rage sale stuff. We have managed to do some of the planning for Cameron's party, but that's about it. I haven't even had time lately to do my Life Lift which I think would help tremendously. This is such a wonderful, exciting time in my life and I'm grateful for everything I've been blessed with, but I'm stressed over it all. Does anybody have ideas of how I can get focused and be more productive? Thanks for any ideas and for just letting me vent for a few minutes. I'm going to make every effort to do my LL tonight and hopefully I'll feel better after that.Peace and happy breathing to all!Amy )

[Guest guest]

Hi Amy,

I have found that with all things in life if you can change the focus to something that makes you feel good you will actually change your body chemistry and you will ultimately feel better. As you go through your day, when you are showering, brushing your hair, packing boxes, whatever, just do some Life Lift breaths. As you blow out through the straw imagine that something is at the end of that straw that makes you smile. Think of a time in your life when something made you feel really happy. After my husband's death someone commented on how I would always smile when I would talk about him and how unusual it was that I seemed so peaceful and serene all of the time. It was because I learned to focus on the joy he brought into my life, rather than the loss. Because of that I have never had that empty feeling that many get. I kept filling the hole with the happy thoughts, the things that made me smile. I find that in all things in our lives it is not what is happening to us as much as it is how we react or respond to that thing.

Think like a child waiting to open a birthday gift. Think of all the things you have to look forward to and do a breath to make the feeling stronger. Like blowing oxygen to fuel the fire of your enthusiasm.

Right now I have about 30 projects that I am working on and at the same time I try to keep the mail up every day. I guess I should and could feel overwhelmed, but that doesn't sound very pleasant to me, so I refuse it. I say go away if an anxious feeling starts to creep in and I take control by thinking of all the wonderful things that will happen from all the things I am working to accomplish. I have complete faith that everything will work out for you. If you combine faith in yourself that you can and will do what you are working to do, and then take a step at a time to accomplish it, you will feel so proud of yourself for all you have done and you will feel happy and serene. I promise! Break down your projects into steps and cross off each thing as you do it. It is amazing how much easier it makes life when you take a moment to write down your projects and then feel the joy that comes from finishing them and crossing them off the list.

Take care and remember, don't hold your breath, breathe!

Rashelle

You are welcome to visit us at http://www.angelmagic.com or http://www.lifelift.com These are Rashelle's personal web sites, any others belong to distributors.join our discussion group at LifeLift-subscribeonelist

Overwhelmed

From: pgmr1@... Hi everyone,I hate to be such a downer, but I'm totally overwhelmed! We have been in the process of having our first home built since August. They finally started construction in December and now the end is close. We are scheduled for our walk through this Thursday and scheduled to close on March 29th. My oldest son's 4th birthday is March 27th and we will be having a party for him at our old home on March 25th. We have a lot of old things that we need to get rid of, which I would like to do in a garage sale. I'm also working on a 'hot' project here at work that is really visable to all of management. My husband works a lot of hours and hasn't been around much lately. We also have a 15 month old that is at a wonderful curious stage so I'm constantly pulling him from danger as well as a 3 month old puppy! It's like I've got so much going on I'm not productive at anything. I can't concentrate at work (proof is this email when I should be working), I haven't packed one box or prepared the ga!rage sale stuff. We have managed to do some of the planning for Cameron's party, but that's about it. I haven't even had time lately to do my Life Lift which I think would help tremendously. This is such a wonderful, exciting time in my life and I'm grateful for everything I've been blessed with, but I'm stressed over it all. Does anybody have ideas of how I can get focused and be more productive? Thanks for any ideas and for just letting me vent for a few minutes. I'm going to make every effort to do my LL tonight and hopefully I'll feel better after that.Peace and happy breathing to all!Amy:o)

[Guest guest]

,

Thanks so much. May God bless you.

Amy )

[Guest guest]

Karma, may God guide you to a beautiful place, lots of rooms, great views, adn a singing brook nearby to listen too and enjoy! Oh, and a great fireplace and lots of wood for warmth, coziness, and romantic evenings!!! W from Oz

Overwhelmed

From: pgmr1@... Hi everyone,I hate to be such a downer, but I'm totally overwhelmed! We have been in the process of having our first home built since August. They finally started construction in December and now the end is close. We are scheduled for our walk through this Thursday and scheduled to close on March 29th. My oldest son's 4th birthday is March 27th and we will be having a party for him at our old home on March 25th. We have a lot of old things that we need to get rid of, which I would like to do in a garage sale. I'm also working on a 'hot' project here at work that is really visable to all of management. My husband works a lot of hours and hasn't been around much lately. We also have a 15 month old that is at a wonderful curious stage so I'm constantly pulling him from danger as well as a 3 month old puppy! It's like I've got so much going on I'm not productive at anything. I can't concentrate at work (proof is this email when I should be working), I haven't packed one box or prepared the ga!rage sale stuff. We have managed to do some of the planning for Cameron's party, but that's about it. I haven't even had time lately to do my Life Lift which I think would help tremendously. This is such a wonderful, exciting time in my life and I'm grateful for everything I've been blessed with, but I'm stressed over it all. Does anybody have ideas of how I can get focused and be more productive? Thanks for any ideas and for just letting me vent for a few minutes. I'm going to make every effort to do my LL tonight and hopefully I'll feel better after that.Peace and happy breathing to all!Amy )

[Guest guest]

Amy, Deep Breaths, and a prayer for you, May God give you a calm spirit, a clear mind, and lots of energy. Good luck to you! W from Oz

Overwhelmed

From: pgmr1@... Hi everyone,I hate to be such a downer, but I'm totally overwhelmed! We have been in the process of having our first home built since August. They finally started construction in December and now the end is close. We are scheduled for our walk through this Thursday and scheduled to close on March 29th. My oldest son's 4th birthday is March 27th and we will be having a party for him at our old home on March 25th. We have a lot of old things that we need to get rid of, which I would like to do in a garage sale. I'm also working on a 'hot' project here at work that is really visable to all of management. My husband works a lot of hours and hasn't been around much lately. We also have a 15 month old that is at a wonderful curious stage so I'm constantly pulling him from danger as well as a 3 month old puppy! It's like I've got so much going on I'm not productive at anything. I can't concentrate at work (proof is this email when I should be working), I haven't packed one box or prepared the ga! !rage sale stuff. We have managed to do some of the planning for Cameron's party, but that's about it. I haven't even had time lately to do my Life Lift which I think would help tremendously. This is such a wonderful, exciting time in my life and I'm grateful for everything I've been blessed with, but I'm stressed over it all. Does anybody have ideas of how I can get focused and be more productive? Thanks for any ideas and for just letting me vent for a few minutes. I'm going to make every effort to do my LL tonight and hopefully I'll feel better after that.Peace and happy breathing to all!Amy )

[Guest guest]

SOLD! I'll take it! Thanks!

~Karma

Overwhelmed

From: pgmr1@... Hi everyone,I hate to be such a downer, but I'm totally overwhelmed! We have been in the process of having our first home built since August. They finally started construction in December and now the end is close. We are scheduled for our walk through this Thursday and scheduled to close on March 29th. My oldest son's 4th birthday is March 27th and we will be having a party for him at our old home on March 25th. We have a lot of old things that we need to get rid of, which I would like to do in a garage sale. I'm also working on a 'hot' project here at work that is really visable to all of management. My husband works a lot of hours and hasn't been around much lately. We also have a 15 month old that is at a wonderful curious stage so I'm constantly pulling him from danger as well as a 3 month old puppy! It's like I've got so much going on I'm not productive at anything. I can't concentrate at work (proof is this email when I should be working), I haven't packed one box or prepared the ga!rage sale stuff. We have managed to do some of the planning for Cameron's party, but that's about it. I haven't even had time lately to do my Life Lift which I think would help tremendously. This is such a wonderful, exciting time in my life and I'm grateful for everything I've been blessed with, but I'm stressed over it all. Does anybody have ideas of how I can get focused and be more productive? Thanks for any ideas and for just letting me vent for a few minutes. I'm going to make every effort to do my LL tonight and hopefully I'll feel better after that.Peace and happy breathing to all!Amy )

[Guest guest]

AMEN!!!!!! I definitely second that :-)

Love, Bonnie

**********************************With God, ALL things are possible**********************************

Karma, may God guide you to a beautiful place, lots of rooms, great views, adn a singing brook nearby to listen too and enjoy! Oh, and a great fireplace and lots of wood for warmth, coziness, and romantic evenings!!! W from Oz

[Guest guest]

Hi, --

Thank you for your moving and informative story. It's amazing that

parents of kids with disabilities, no matter how much they do and how

much they sacrifice, end up feeling guilty for things they think they

should've/could've done. It sounds like you and your family have done

a magnificent job.

I will file this away with the hope of adding a section on Jeune's

Syndrome to the " Where Do I Begin? " page of dwarfism types. As you

could probably tell, I've tried to make it selective, and to point

people to helpful information that a lay person can understand, which

is why many of the rarer types of dwarfism are not on there.

And if you can point me to useful information on the Web, I would

appreciate it.

===========================================================

Dan Kennedy

Internet services coordinator

Little People of America, Inc.

http://www.lpaonline.org

[Guest guest]

Lee,

I can certainly sympathize with you on this one, babe!! Sorry things

are so rough for you right now. Hope that it gets better soon...and YES,

you ARE allowed to have needs of your own. You were a person before you

were a mother.

l harris wrote:

>

>

> I really need a break. It seems like the kids have constant needs.

> Aren't moms allowed to have needs?? I am in pain but I can't take

> sufficient pain meds because I won't be functional for the kids. I am

> so tired. I wish I could just sleep all week-end but there is no one

> to take the kids. I have to hold on, until the 2nd week of August.

> There is a possibility that both kids will be away for 2 nights. Sound

> like utopia at this point. Could it be possible to have 2 whole days

> and nights off?? Am I dumb to get my hopes up? Single motherhood is

> for the birds. I wish a good man would pop into my life.

>

> Love, Lee

>

> " Write a to-do list every day and put #1 as Eat Chocolate. That will

> guarantee that you will complete one item each day. " els

>

>

> -----------------------------------------------------------------------

>

[Guest guest]

> I had to chuckle when you said you are looking for a " Good

Man " . . . . isn't that an oxymoron or something?

Hey lots of men are good!! Actually I find that I get on better with

men then I do women as so many women are very manipulative and

bitchy! I married a good man! And look at Leighs ! What a

darling! They do exist!

I think a better oxymoron (or just a total moron) is someone who

knows you feel like crap cause you are sick and they say " Hope you

are felling well " ... I want to slap them. Its like HELLO... I have a

chronic illness....what does well feel like cause I dont remember it!

Ok ... I'm rambling!

Aisha.

[Guest guest]

I had to chuckle when you said you are

looking for a " Good Man " . . . . isn't that an oxymoron or

something? I know mine is a moron anyway....

janalise

At 02:13 PM 7/28/00 -0700, you wrote:

I really need a break. It seems like the kids

have constant needs. Aren't moms allowed to have needs?? I am in pain but

I can't take sufficient pain meds because I won't be functional for the

kids. I am so tired. I wish I could just sleep all week-end but there is

no one to take the kids. I have to hold on, until the 2nd week of August.

There is a possibility that both kids will be away for 2 nights. Sound

like utopia at this point. Could it be possible to have 2 whole days and

nights off?? Am I dumb to get my hopes up? Single motherhood is for the

birds. I wish a good man would pop into my life.

Love, Lee

" Write a to-do list every day and put #1 as Eat Chocolate. That will

guarantee that you will complete one item each day. " els

[Guest guest]

Aisha and all,

I guess that I have to plead guilty to being a moron, then, cuz I

often say to you all and to others on the mito egroups that I'm on that

I hope you're feeling well. Of course I know that you have a chronic

illness, and I don't mean to say that I hope you're feeling perfect,

just as well as you can...I think it's said not out of stupidity, but in

an attempt to convey my well wishes for you.

I also understand that as someone that has never experienced a

chronic illness, that I couldn't possibly understand how you're feeling.

And I know that you (a lot of you) have been let down and made unhappy

by those that you loved and cared about. But I don't think it's fair to

say that all of those who express concern and wishes for your well-being

are stupid or morons.

People often ask me (people on this list included) " how are you? " or

" how are you feeling? " Well, my son just died. How do you think I feel?

So it's not exactly the same as your situation, but close enough that

you can understand the correlation. But I understand that most people

ask out of concern for me, not to diminish what I have been through or

downplay how I feel right now.

I think it's important to keep things in perspective...it's not fair

to assume that everyone who says something that you might feel is

inappropriate is doing it intentionally to hurt you. Some of us do care,

and if we don't express it quite right, then I guess you can add me to

your slapping list.

aisha@... wrote:

> > I had to chuckle when you said you are looking for a " Good

> Man " . . . . isn't that an oxymoron or something?

>

>

> Hey lots of men are good!! Actually I find that I get on better with

> men then I do women as so many women are very manipulative and

> bitchy! I married a good man! And look at Leighs ! What a

> darling! They do exist!

>

> I think a better oxymoron (or just a total moron) is someone who

> knows you feel like crap cause you are sick and they say " Hope you

> are felling well " ... I want to slap them. Its like HELLO... I have a

> chronic illness....what does well feel like cause I dont remember it!

>

> Ok ... I'm rambling!

>

> Aisha.

>

> -----------------------------------------------------------------------

>

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[Guest guest]

I guess that I have to plead guilty to being a moron,

then, cuz I

often say to you all and to others on the mito egroups that I'm on

that

I hope you're feeling well.

...

I have

always thought of you, as one of us. Does that make sense?

I actually believe that you went through something WORSE than any of us.

Because your children are NOT supposed to die before you.

People often ask me (people on this list included)

"how are you?" or

" how are you feeling?" Well, my son just died. How do you think I

feel?

So it's not exactly the same as your situation, but close enough that

you can understand the correlation. But I understand that most people

ask out of concern for me, not to diminish what I have been through

or

downplay how I feel right now.

I think it's important to keep things in perspective...it's

not fair

to assume that everyone who says something that you might feel is

inappropriate is doing it intentionally to hurt you. Some of us do

care,

and if we don't express it quite right, then I guess you can add me

to

your slapping list.

You would

be that the BOTTOM of my list of those that need to be slapped. I

think when "we" have nasty things to say about those that have made "us"

feel so badly, and who don't always give "us" the credit for having a brain.

It irritates

the Hell out of me, when those that I used to work with treat me as a Second

Class Citizen with no brain or education. And because I don't LOOK

sick, I just lose friend after friend because they can't or more accurately

they will NOT try to even understand where I am coming from.

It breaks

my heart, that because I don't look sick, most of my friends and family

think I am just "Full of It"! And the doctors... they just use every

word I say against me, to further prove to themselves that everything that

is "wrong" with me... is all psychiatrically based! My allergies,

my MCS, my PTSS, everything from the day I was born is all full of shit....

all my own fault, all from within my mind.

Even

though the majority of my allergies are medically documented, they are

discounting everything to the fact that I was a paramedic, and I am a good

actress!

Please

don't feel like the whole issue of "How are You?" was directed to you,

or anyone else on this list. Mostly it is just frustration.

I am

doing okay today, although between my PMS, and my friends stabbing me in

the back... All I want to do is cry! And then if life wasn't already

really charming, my allergies are set off. Someone around my neighborhood

has decided it would be fun to spray some wicked amount of air freshener.....

I can't breathe the moment I walk out my front door. When it gets

really strong, I can't even get away from in my house. I can smell

it here sitting in my living room!!!

AHH!

Anne

[Guest guest]

Hi Anne:

I had to comment on some of the things you said in your email. I have a University education and was thought to be a very intelligent woman. People would look to me for information. I always had many friends or acquaintenances. But after a car crash 18yrs ago and being left INVISIBLY disabled, my social life changed greatly. I have been fortunate that most of my doctors have never said I was nuts, but I can't say the same for the rest of my family and friends. Of all the social stigmas attached to people like us, the one that I find most intolerable, is that I'm always being treated like an idiot. I would like a penny for every time in the past 18yrs that I have said "it's my body that is f*ed up, not my brain.

Even our insurances and GOVERNMENT disability treat us like we are not worthy of respect. After all we don't work - and why - becuz we are welfare bums, We are lazy and just want to stay home.The family is long gone. I watched my friends slowly disappear over the years. And then 18 surgeries in 3 years - 4 of them resulting in my being house bound for 3 mos. each - well there were only a handful left. But when I was left totally broke, no income (fighting with gov't for disability), my food came from vouchers from the church and then I was evicted and had to live in my car. Do you know how many left? NONE. Well, I better get off my soap box - I could go on forever and all that happens is I get upset.

Marsha, Buddi (with a heart over the i) & McgiverI/M # toys2pooICQ# 41368971

[Guest guest]

Hi ,

While we're here to help you, we have apparently also overwhelmed you with

information. My best advice is to just change one thing at a time. This

way, you won't be so overwhelmed (no one can do it all at once) and also you

will be better able to distinguish which changes are working for . If

you do too many things at once, you won't know which changes were beneficial.

So, just store the information, and start out a little at a time.

I think I can say for most of us that we have made these changes over time.

Our kids get diagnosed a little at a time, and we make changes as we go

along. started out with chronic sinus infections, so the changes I

made first were to address that issue. As other diagnosis were added, I made

additional changes. Only recently was he diagnosed with Asthma and GERD, so

those changes are the most recent.

It might be beneficial for you to kind of " triage " the situation. Decide

what is the most important health issue, and make those changes first. Then,

go on down your list at a COMFORTABLE pace. Some of the issues you talk

about should be brought up to your Ped, such as the GERD. Let them help you

with that one.

Breathe, breathe, breathe and don't forget to take care of yourself, also.

Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Falot, chronic

sinusitis, chronic ear infections, asthma, severe allergies, GERD. Ten

surgeries, heart surgery pending.

[Guest guest]

, we have all been overwhelmed like that before too. And I still

get overwhelmed if I think too far into the future. I pretty much cope

day by day. As for doing things to make healthy, you are doing

things already! You have taken her to doctors, you've had tests done. If

those doctors can't help, you'll look for one that can and keep looking

until you find one. Kody has had I think the world's record for the

longest sinus infection in history and is now on his 4th week of IV meds

for it. Have I gotten rid of our cats? No. Why? Because he isn't

allergic to them. And because one of them is his, and he loves it. If

is allergic, getting rid of them would help, but then so would

allergy shots. We do not have carpet anywhere in our house. Kody's

asthma was horrendous and out of control so when we bought this house 2

years ago it had old carpet (not to mention ugly!) so we ripped it up

and low and behold there was beautiful hardwood floors underneath.

Incidentally, Kody's asthma is better, I think not because he is

allergic to dust (he isn't) but simply because he isn't breathing it in

as much. But would it help 's sinuses....maybe if she was very

allergic to dust, but, in general I think that it wouldn't make that

much difference and would take a while to see results. I think that a

simple, and not too expensive (not like replacing carpet!) option would

be an air purifier. Been really thinking about getting one of those

myself, and from what I have read, it really does clean the air of

pollutants and toxins. A note on the sinus washes, we were told not to

do that with Kody as they think there may be some scar tissue blocking

his sinuses and we would possibly do more harm than good doing that.

Although his sinus problem admittedly is unique and they may help her. I

think that at age 3, she probably doesn't have good blowing skills, so I

think one simple way to help her stay healthy is to use a nasal

aspirator and suction some of that gunk out. That might help a whole

lot! And although she might not like it, I think it would go over a bit

less traumatically than a nasal wash! Worth a try first anyhow. Another

thing is, have the doctor biopsy the gunk...might be a type of bacteria

that needs a particular type of antibiotic. And IV antibiotics are being

used more and more for sinus infections that are so constant like that.

And the nebulizer machine with saline in it is a good idea to help thin

out and loosen the gunk. You are doing a great job keeping her as

healthy as you can. Oh, and here is a quick note, please be careful with

the herbal remedies, some of them actually negate the antibiotics, and

some react badly with them. Take a deep breath, handle one day at a

time, and do what you can for that day. That is all any of us can do.

You are doing wonderful, and what great news you got today about the CF!

Diane, Mom to Kody, age 6, Di Syndrome, hypogammaglobulinemia,

seizure disorder, asthma, and CAPD

[Guest guest]

:

I agree, just try to do things one at a time. If is only a little

sensitive to the animals, what about banning them just from HER room and also

having an air purifier in there?

About the herbals... I'll try to remember the right way to say this but

someone on the list previously gave information that herbal remedies in

general, and echinacea in particular, should not be used with people with

PIDs. With many PIDs, the immune system not only doesn't work well, it can

also work wrong and some people have autoimmune problems from overstimulation

of parts of the immune system. So the theory is if you try to stimulate the

immune system (with herbal remedies for instance), it might rev up in a way

you don't want, such as an autoimmune disorder.

I don't want to scare you or frustrate you with that information, but I HAD

to tell you!

Now, that said, don't try to fix everything at once. I know I was terribly

overwhelmed at first and wanted to fix anything I could, too. But just take

one thing at a time and go slow. So maybe ban the animals from her room

alone. We have wall-to-wall carpet and it never bothered me... the cat never

bothered me either. It was when the cat lived in my room/bed 24-7 and also

when all the mold grew in our walls... it just all accumulated to a point

where it overwhelmed me. So if you just cut down on things a little at a

time, you could bring overall levels down without having to go nuts and make

drastic changes.

If you think her environment is causing her problems, just keep animals out

of 's room. You don't have to automatically get rid of them. Use an

allergen filtration bag on your vacuum cleaner if it allows it and if so,

vacuum more. Get an air purifier. Start small and don't try to do it all at

once, because you CAN'T. I never worry about toxins and that sort of thing, I

figure I have enough to worry about just trying to minimize germs and

exposure. You can't protect her from everything, nor should you need to.

I don't know what Allergy-D is, but I'd discuss any med changes with the doc

first. Is she on an allergy med? Seems like that would help if the doc agrees.

Oh, back to the herbal stuff -- everyone I've ever heard talk about it still

recommends acidophilus or l-acidophilus, that one apparently has no risks,

only benefits. So get rid of the echinacea but keep the acidophilus.

Sorry so long! But I feel responsible for scaring you off your animals!

(mom to , age 3. Currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs)

[Guest guest]

Thinking of you. {{{HUGS}} I have two boys with Shwachman-Diamond Syndrome.

.. here is a link with more info on the disease www.shwachmandiamondamerica

org

They had failure to thrive and were tested for CF, Celiac, etc etc... they

have to take enzymes b/c they have pancreatic insufficiency as in CF, but

have SDS which is the second most common cause of pancreatic insufficiency.

CF is the most common cause. had loose, foul smelling stools...but

ph hasd some normal stoools in there.. is the one who has SDS and

also havs low immunoglobulins...

We live right on the NC border and go into Winston for all our doc appts.

takes us 1 1/2 hrs to get there.

wish I could be of more help to you. Please know that I am thinking of you

and saying a prayer

pattie

-- Overwhelmed

We got some good news this morning, is negative for Cystic

Fibrosis. Thank God. On to the next set of tests. We should hear back

on the rast and Immune stuff a week from Tuesday.

I am just feeling so overwhelmed and I don't know what to do. There

are so many things that we need to change to try and make

healthy, and I don't know where to turn first. I am trying to come to

grips with getting rid of the animals, though they are doing a good

job of convincing me themselves, I should be ready to toss tehm out

the door by the weekend. Every day for the past week I have either

cleaned up cat vomit, dog pee, dog poop, or dog spit up. I am at my

wits end with these creatures, my husband is convinced we are jinxed

against having a " normal " pet. So, once we get rid of the animals,

will that be good enough, or will the carpets need to go as well? And

if we remove the carpets and replace it with something else, what

about the toxins emitted?

What about the chance she has Gerd? Or celiacs? Or maybe milk is

upsetting her mucus membranes? I feel like screaming, I don't know

where to turn. What if one of these changes will help, but not the

other, it's going to be one frustrating thing after another I am

afraid, trying to keep her well.

We've put her on herbal drops (echinacea or something), and

acidophillous. We are increasing her water intake to try and thin her

secretions, and took her off the D-Allergy, as I suspect that's been

drying them up and causing them to be more gluey.

Sorry for rambling, I just had to vent and get it out.

Anyone know of a good immunologist familiar with pediatric chronic

sinusitis in the Charlotte NC area or surrounding region?

What is the most gentle and easy to use nasal wash system? She's only

3, so I want to make it as easy on her as possible. Any chance

insurance will cover it?

Thanks for listening.

JEnnifer and 1/24/99

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.

[Guest guest]

PUH-LEASE! No need to be sorry! We're all in the same boat and we all get

overwhelmed..heck with two sick kids, I think I live 99% of my life

overwhelmed! Always wondering what the heck is around the corner!

{{{HUGS}}}

Pattie

[Guest guest]

Thank you, everyone. I am sorry to whine at you all so much, I am

really not like this, lol! I think it' sall been bottling up, we've

been so alone in this until now.

Thankfully, is a pro at blowing her nose. We just have to

say, " , don't you want me to read you that story? " , or " ,

didn't you want to watch Sponge Bob? " , to which she of course

says " yes! " , and we then say, " Well, blow! " and she does, haha!

Whatever works, right? And you know, I don't know if this is a fluke

or coincidence or what is going on, but her discharge has decreased

by about 75% in the past 2 days and it isn't quite as bright or dense

as it had been. I wonder what's going on there?

As for the animals/carpet, did get a 2 to both cats and dogs.

While that is just labeled a sensitivity, does it sound plausible

that, assuming she does have a PID, the sensitivity is creating

enough of an irritation in her mucus membranes to house a bacteria

breeding ground, whereas in a " normal " person it wouldn't be enough

to breed, i.e. it would be weak enough to be fought off successfully

by the immune system? I know I am reaching, but it's possible, right?

Jen

1/24/99 " what's the big deal about green boogies, mom? "

[Guest guest]

This is just a " me " personal thing.........I would implant her left ear and

wear the hearing aid on the right. But thats just me.........I am a

" cautious " person. You honestly just have to follow your heart.......and don't

look

back.

Best wishes.......I am sure it will all work out fine. You are obviously a

very caring.....involved mom.

Enjoy,

ps. keep us posted

[Guest guest]

Hi ...Wow.. This was quite a message and a very exciting one at that.

This seems like wonderful news and I can understand why you are feeling

overwhelmed. This surgery is only month away and you certainly have some

decisions to make.

I'm going to let others comment on their experiences but I want you to know that

this is a remarkable offer and I am sure there are a lot of things to consider.

Most likely the audiologist didn't offer any advice but I imagine, given the

opportunity, that advice might be offered to you.

Much of this decision depends on how much hearing she now has in the right ear

which could be left aided but with the added threat of ossification, later

implant surgery could be less successful than now.

I'd like to hear what you are thinking. I already know what I think I would do

but she's not my child so I hestitate to make any real suggestion. I think my

best suggestion would be to take that piece of paper and write down the pros and

cons of each option and see which results in the most positive answers for her.

Whatever you decide, I have no doubt that she is going to be the one who

benifits by brave parents who want the best for their child. Alice

From: rwanha

I am hoping someone can help me out. My daughter has been diagnosed

with a severe to profound hearing loss on the right ear and then a

profound loss in the left. She is scheduled to have CI surgery on

3/1/04. We can implant the left ear and then use a hearing aid on the right,

we could implant the right ear and do nothing with the left, or (and this the

choice that I was not expecting at all) we could implant both ears. For some

reason I had written this off as a possibility for my daughter. Mainly just

because it is so new that I did not think they would do it with her. I really

need help. Anyone out there had both ears implanted? Anyone have any

suggestions for us? I am really trying to work this through. And just to

further this decision along, this is our one

shot. Because my daughter lost her hearing from bacterial meningitis

and they are worried about ossification. So basically we need to

decide what we are going to do and that is what she will have to have for the

rest of her life. They don't think at this point they would be able to implant

the other ear down the road. This decision for me is even harder than the

choice to implant so any help that anyone can give me would be greatly

appreciated. Thanks so much!!!

mother of CI candidate.

[Guest guest]

Alice, I would love to hear what your thoughts are. Don't worry I am taking

everyone's opinion and keeping track. That is helping me get the pros and cons.

Just tell me what you would do if it was your child. If you don't want to post

it hear on the group feel free to email me privately or if anyone else would

like to comment off the group I am okay with that. My email is

rlw70@....

I am really trying to work through this and for me the more people who give

their opinions the better because I feel like I won't miss some of the pros or

cons.

Thanks.

Re: Overwhelmed

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