When will I quit being so MAD?

November 3, 2004

Golly, I feel like I don't know myself these days. Since we started

having all of these wheat/gluten issues with my daughter, I feel like

a totally different person. I feel like there is so much pressure

and responsibility on me - basically, that if anyone is going to

figure out what is wrong with her, it's going to have to be me,

because the medical community is NO HELP.

I went to see a counselor (sp?) yesterday and just VENTED like

nobody's business for an hour and I felt so much better afterwards

and here I am this morning, all tied up in knots again.

This is so not me! Has anyone else had a similar experience? Thanks

for listening...

November 3, 2004

I did at first. I was battling my sister, who said that since I couldn't control every aspect of his life, that I shouldn't even try. At least, that's what I HEARD...not what she meant. She was simply trying to help me understand that, no matter how vigilant I am, he will still be exposed at times.

I get frustrated when I explain for the fifth time to a waiter that we can't have anything made with flour AT ALL (bread, croutons, noodles, gravy...), and then they still bring his salad with croutons on it. I become suitably annoyed when they recommend I remove the croutons and feed it to him anyway. So, I now overexagerate it a little. I find that if I say he is "Violently Allergic" to these ingredients, they tend to listen. Sometimes.

Long story short, I do what I can, control what I can, and don't sweat the small stuff. The waitress yesterday was unsympathetic, and it was reflected in her tip.

Have a cuppa, or maybe a glass of wine...and realize that as serious as Celiac is, there is always another day to get it right. As far as I'm concerned, I would always pick this over a peanut allergy. I don't have to live in constant fear that my son will die every time I take him to preschool...

Becki

When will I quit being so MAD?

Golly, I feel like I don't know myself these days. Since we started having all of these wheat/gluten issues with my daughter, I feel like a totally different person. I feel like there is so much pressure and responsibility on me - basically, that if anyone is going to figure out what is wrong with her, it's going to have to be me, because the medical community is NO HELP.I went to see a counselor (sp?) yesterday and just VENTED like nobody's business for an hour and I felt so much better afterwards and here I am this morning, all tied up in knots again.This is so not me! Has anyone else had a similar experience? Thanks for listening...

November 3, 2004

I know what you mean. It is a huge burden to have, knowing that the

health and welfare of your child rests solely on your ability to figure

this out. I understand the need for a medical diagnosis because it

validates what we are doing and helps solidify our case to family and

relatives who may need 'gluten intervention.'

It is costly and frustrating to try to get a medical, scientific

diagnosis or confirmation of what we already know. I just wanted

someone to acknowledge that what we are experiencing is real and not in

our heads and not exaggerated and not a result of a hyper-paranoid

mother!

I would like for my doctor to acknowledge the problem and do follow up

testing to make sure the diet is working and that he is getting the

nutrients he needs....

I totally understand... when you are a mom you wear many hats and

adding scientist and researcher and dietician and doctor on top of it

adds an extra burden.

Knowing that the cure is as simple as a diet change is the best. I am

glad it doesn't require any prescription to accomplish. And that it is

one of the only auto-immune disorders that is curable is a good thing.

I remember when we were in the hospital with our son and the doctor

first mentioned CD I was scared, the word 'disease' frightened me. But

when I went home and started researching and all the pieces fit and I

read that the recovery in children is 90% - 100% when following a GF

diet... well, I was thankful that that's what it was!

Anyways, just wanted to say, I hear you and I understand and that you

are such a great mom for doing what you are! We can only do our best,

and if our best means putting our children on a restrictive diet for

their benefit then so be it.

God bless!

Priscilla Graham

" Cleaning your house while your kids are still growing is like

shoveling the walk before it stops snowing. " --Phyllis Diller

SAHM to 3 beautiful boys and one adorable girl

- 6

- 4 (Gluten Free since 11/03)

- 2 (GF since 7/04)

Abigail - 7 months (staying GF until ?)

My hands are full, but my heart is not!

November 3, 2004

I get mad. The day my results came back I sat on my

bed alone and had a hard cry. When my kids came back

with the positive--I cried harder and longer.

My hubby is still a little bent out of shape about it

all. He wants " the boys " to have beer parties in

college and take them to his favorite steak house.

I'm just so glad that this is all we have to deal with

(so far) compared to our friends who almost lost their

5 year old daughter to cancer.

Some days I feel frozen by hidden gluten. Now I'm

getting into cooking it all so I know what is in all

of it.

We are here for each other. Good days and bad days.

--- Becki wrote:

> I did at first. I was battling my sister, who said

> that since I couldn't control every aspect of his

> life, that I shouldn't even try. At least, that's

> what I HEARD...not what she meant. She was simply

> trying to help me understand that, no matter how

> vigilant I am, he will still be exposed at times.

>

> I get frustrated when I explain for the fifth time

> to a waiter that we can't have anything made with

> flour AT ALL (bread, croutons, noodles, gravy...),

> and then they still bring his salad with croutons on

> it. I become suitably annoyed when they recommend I

> remove the croutons and feed it to him anyway. So,

> I now overexagerate it a little. I find that if I

> say he is " Violently Allergic " to these ingredients,

> they tend to listen. Sometimes.

>

> Long story short, I do what I can, control what I

> can, and don't sweat the small stuff. The waitress

> yesterday was unsympathetic, and it was reflected in

> her tip.

>

> Have a cuppa, or maybe a glass of wine...and realize

> that as serious as Celiac is, there is always

> another day to get it right. As far as I'm

> concerned, I would always pick this over a peanut

> allergy. I don't have to live in constant fear that

> my son will die every time I take him to

> preschool...

>

> Becki

> When will I quit being so

> MAD?

>

> Golly, I feel like I don't know myself these days.

> Since we started

> having all of these wheat/gluten issues with my

> daughter, I feel like

> a totally different person. I feel like there is

> so much pressure

> and responsibility on me - basically, that if

> anyone is going to

> figure out what is wrong with her, it's going to

> have to be me,

> because the medical community is NO HELP.

>

> I went to see a counselor (sp?) yesterday and just

> VENTED like

> nobody's business for an hour and I felt so much

> better afterwards

> and here I am this morning, all tied up in knots

> again.

>

> This is so not me! Has anyone else had a similar

> experience? Thanks

> for listening...

>

November 3, 2004

See, this is why these groups are SSSOOOO important. No matter what rant you post, someone is always right there to say "I know how you feel..." and then to say, "...but it does get better."

I sobbed long and hard when I got the call with my sons diagnosis. Mostly it was out of relief, I would much rather have him deal with this than the myriad of things they were also testing for, but it was also out of anger bc no child should ever be sick of have anything wrong with them. And it was also out of fear, fear of what the heck was out there for him to eat??? How would he be able to go to daycare, how could I still work, how would we ever eat out, how was he going to survive being a teenager without pizza and burgers?? (keep in mind my son is 3, so a LONG way from teenager-hood...but we moms are like that....)

But, life goes on. Despite all the insensitive people who roll their eyes at you when you are "difficult" at a restaurant, and despite all the people who mean well, but still don't get it (there's wheat in spaghetti? I thought it was from semolina...sigh....) life goes on. Stay with your counselor, it will help you immensely even if it is just to vent and relieve your stress. Trust me, I had never been to one before but went shortly after my sons diagnosis to learn how to cope with the stress (I started having massive anxiety attacks) and it's done wonders. And keep coming to your "virtual support groups" It isn't doctors or even our friends and family who help us the most, it's the people right here in the trenches who truly understand, can offer tips and even just the virtual hug of understanding and "me too" that we all sometimes need.

And the most important thing of all to remember? It's ONLY Celiac Disease. You do the best you can to keep her "clean" but the reality is that you will make mistakes, that gluten will probably slip in there once in a while, and you just have to keep it in perspective. She may get sick she may feel crappy, but tht will pass and as long as the majority of her diet is GF the occasional slip-up will not set her numbers (or her intestinal damage) back to square one. Thankfully unlike other things (ie peanut or shellfish allergies) this is something where a mistake sucks, but it's not life or death.

So, take a deep breath. Realize you don't have to be perfect, and keep coming back to your friends for support. That's why we're all here.

Oh, and live with the knowledge that while all this rests on you right now...when you're old, it will be payback time and then your daughter will have to take care of you! :-)

Hope this helps a little.

Bridget

-----Original Message-----From: heather waters Sent: Wednesday, November 03, 2004 12:39 PMTo: SillyYaks Subject: Re: When will I quit being so MAD?I get mad. The day my results came back I sat on mybed alone and had a hard cry. When my kids came backwith the positive--I cried harder and longer.My hubby is still a little bent out of shape about itall. He wants "the boys" to have beer parties incollege and take them to his favorite steak house.I'm just so glad that this is all we have to deal with(so far) compared to our friends who almost lost their5 year old daughter to cancer.Some days I feel frozen by hidden gluten. Now I'mgetting into cooking it all so I know what is in allof it.We are here for each other. Good days and bad days.--- Becki wrote:> I did at first. I was battling my sister, who said> that since I couldn't control every aspect of his> life, that I shouldn't even try. At least, that's> what I HEARD...not what she meant. She was simply> trying to help me understand that, no matter how> vigilant I am, he will still be exposed at times. > > I get frustrated when I explain for the fifth time> to a waiter that we can't have anything made with> flour AT ALL (bread, croutons, noodles, gravy...),> and then they still bring his salad with croutons on> it. I become suitably annoyed when they recommend I> remove the croutons and feed it to him anyway. So,> I now overexagerate it a little. I find that if I> say he is "Violently Allergic" to these ingredients,> they tend to listen. Sometimes.> > Long story short, I do what I can, control what I> can, and don't sweat the small stuff. The waitress> yesterday was unsympathetic, and it was reflected in> her tip. > > Have a cuppa, or maybe a glass of wine...and realize> that as serious as Celiac is, there is always> another day to get it right. As far as I'm> concerned, I would always pick this over a peanut> allergy. I don't have to live in constant fear that> my son will die every time I take him to> preschool...> > Becki> When will I quit being so> MAD?> > > > Golly, I feel like I don't know myself these days.> Since we started > having all of these wheat/gluten issues with my> daughter, I feel like > a totally different person. I feel like there is> so much pressure > and responsibility on me - basically, that if> anyone is going to > figure out what is wrong with her, it's going to> have to be me, > because the medical community is NO HELP.> > I went to see a counselor (sp?) yesterday and just> VENTED like > nobody's business for an hour and I felt so much> better afterwards > and here I am this morning, all tied up in knots> again.> > This is so not me! Has anyone else had a similar> experience? Thanks > for listening...> > > > >

November 3, 2004

From what I have been reading over the last couple of months, I think everyone

here has

felt this way at some point. For me, I had to convince my husband. I didn't even

have a

partner in this battle. I have had to PROVE it to him as much as I have the

doctors. I feel

quite blessed that both doctors and husband are coming around to the same page.

Gosh,

maybe I should have gone to law school!!!????? I feel great accomplishment at

just proving

this one thing. Now to have it being justified by our daughter feeling better?

Heaven.

I still get pretty angry at my family though. If you have read some of my posts,

I believe I

am also quite likely celiac. As is my brother and his daughter. My brother was

given

growth hormone before age 2 for failure to grow. Now his daughter is 12 and has

bone

growth 3 YEARS behind normal. Celiac was never considered in her, because she

was 1)

and preemie (who tend to be slower growing) and 2) " she is probably a small

child of small

parents " . Hot dang I get sick of that one. Perhaps if it is actually tested and

people are

diagnosed, we will stop being so short!!!! DUhhh.....

We all have days. Hang in there.

Cheryl in Tampa

>

> Golly, I feel like I don't know myself these days. Since we started

> having all of these wheat/gluten issues with my daughter, I feel like

> a totally different person. I feel like there is so much pressure

> and responsibility on me - basically, that if anyone is going to

> figure out what is wrong with her, it's going to have to be me,

> because the medical community is NO HELP.

>

> I went to see a counselor (sp?) yesterday and just VENTED like

> nobody's business for an hour and I felt so much better afterwards

> and here I am this morning, all tied up in knots again.

>

> This is so not me! Has anyone else had a similar experience? Thanks

> for listening...

November 3, 2004

After my daughter was diagnosed this summer the gastro made an

appointment for us to meet with a dietician within a week. Then the

day before the appointment I got a voice mail that they needed to

reschedule the appointment. Now at this point I was already

emotional; relieved to finally know what was wrong with her, upset

becuase the reality of life without gluten had begun to set in, and

for 3 days I had not thought of one thing to feed her. So I called

the clinic back to reschedule. The receptionist informed me that

there had been a problem and they needed to see her at a different

time. I was thinking later that day, or maybe the next day, but

then she told me the soonest they could get her in was 4 1/2 weeks

away. I completely lost it! I think I even started screaming. I

know I was sobbing and telling her all sorts of things like it would

be her fault if my daughter starved to death or got worse becuase I

fed her the wrong thing. I finally hung up on her and called my mom

at work and sobbed for another 2 hours. Finally I had enough

composure to call the clinic back, apologize and finally schedule

that appointment (it still makes me mad though). I just couldn't

believe my reaction. I just don't do things like that. The

receptionists at my work take so much from my clients that they are

not responsible for that I have always sworn I would never treat a

receptionist bad and yet here I was going off the deep end.

I had a close friend who helped me to finally understand how I was

feeling by suggesting that I was in " mourning " . Mourning for the

childhood I thought she would have and now never would. Does that

make any sense? And it is bad enough to be going through that with

support, but when the medical profession who is supposed to be on

your side turns on you then it can really be hard to keep it

together!

Good Luck and know that we are all in this with you. Sometimes it's

just nice to know that others feel the same way. Finding this group

has definately helped!

>

> Golly, I feel like I don't know myself these days. Since we

started

> having all of these wheat/gluten issues with my daughter, I feel

like

> a totally different person. I feel like there is so much pressure

> and responsibility on me - basically, that if anyone is going to

> figure out what is wrong with her, it's going to have to be me,

> because the medical community is NO HELP.

>

> I went to see a counselor (sp?) yesterday and just VENTED like

> nobody's business for an hour and I felt so much better afterwards

> and here I am this morning, all tied up in knots again.

>

> This is so not me! Has anyone else had a similar experience?

Thanks

> for listening...

November 3, 2004

Mourning is the PERFECT way to describe this, because I really believe that we

all go through the " 5 stages of mourning/grief " when handed a diagnosis like

this...the denial, the anger, the grief, the dealing with it and the acceptance.

Or whatever they really are called. Anyway, that's exactly what this is, and

sometimes just like with " real " mourning or grief we all revert back to one of

those first phases every once in a while.

As for your nutritionist appointment, I don't know hwat your experience was, but

when I FINALLY got in to mine (a month into the diagnosis) turns out I ended up

teaching her a thing or two. I had done so much research on the internet, and

found so many groups like this one, that I was WAY ahead of what she knew. It

was sort of depressing. Of course, what was even more depressing was when I got

the hospital bill and found out that even though this was a medically necessary

diet, and I needed to be taught about it, my insurance company denied the claim.

Sigh. Gotta love those disgusting crooks at insurance companies. Let's insure

everyone, let them pay us outrageous premiums, and then not cover anything!

YAY!!!

But that's a different thread.... ;-)

Bridget

________________________________

From: niecee222

Sent: Wed 11/3/2004 9:16 PM

To: SillyYaks

Subject: Re: When will I quit being so MAD?