RE: More more more

[Guest guest]

In a message dated 3/12/2004 7:52:54 AM Pacific Standard Time,

monica-jb@... writes:

Anyway - could you get an infection by using Q-tips? Could she be pushing

dirt and crud into her ear, until it gets infected?

Yep!

Debbi

[Guest guest]

In a message dated 3/12/2004 7:52:54 AM Pacific Standard Time,

monica-jb@... writes:

She's got so much medication put into her so often, it makes me sick! It's

so hard to imagine that she's only 15, and the amount of meds she's had is way

more than a lot of people ever get in a lifetime!

They also gave her percocet until the pain goes away.

The toradahl worked pretty good. That's a good drug to use, but only every

once in a while. It's not a narcotic, but you can't use it very often cause it

can damage the liver. She's had it twice now.

***************

~~

With all the stuff you are going thru right now this really should not be a

big, BIG worry. If she has no signs of addiction and the drugs do the trick

when they are supposed to than let that be a relief not a worry.

By 's age I had already had 7 orthopedic BIG injuries that 5 had to be

resolved by reconstructive surgery. As you can imagine I had quite a bit of

major drugs. I have had panels all thru my life to keep a look out for my

liver and other possible damage to other organs. That might make you feel a bit

better ... later ... much later after some of this calms down to speak with

your doctor frankly about damage. If he orders tests it might just be to give

YOU peace of mind but it certainly will not hurt to get baseline levels in

's chart.

Just a suggestion.....

BTW ... was your husband able to go to the hospital with you last night?

If so good ... if not....................... well, ... work or no work he

really needs to get involved more at least to really see how tiring and

stressful

all this is for you.

Sorry if that was out of line ... just .... I read your post that said the

other day with the back issue was the FIRST time he had gone with you and really

seen what is going on... I cant help but think if he went with you at least

that would lessen the stress you are under.

I remember as a kid (injuring my self ALL the time) my dad was always there

in the hospital with my mom. He worked like the dickens too ... two jobs!

I thought as a child it was for me which made me love and respect him all the

more but now as an adult I see now it was not for me as much for my mom.

I hope things start to clam down a bit for you.

Debbi

[Guest guest]

Hi,

I don't know if she has reflux, but she does have stomach problems - lots of

gas.

We have always thought she is lactose intolerant.

She had one of the naturopathic food allergy tests, and they said milk, peas,

citrus, and something else I can't remember.

Of course, she still eats those things. She has limited the milk, but she eats

chocolate and ice cream.

That is interesting about closing of the tubes. I noticed it felt swollen and a

bit hard in that area from behind the earlobe and down her neck. I don't know

if it's just swollen glands, or what. It just felt like an area the size of an

artery. It's hard to explain.

I've heard of candling. Some people swear by it. I've never tried it.

I suppose I'll have to look into what to do about all that wax. I don't know

what color it is, but I'll try to find out.

She has always gotten swimmers ear in the summer. I don't know if that has

anything to do with anything. It seems she gets it very easily. She hasn't

been swimming lately, so that isn't her current problem.

It's just a regular thing - getting an ear infection - so it sounds like I'm

making a big deal out of nothing really.

But, it's just the accumulation of everything that's getting to me.

I wish I could just have ONE day to not do ANYTHING. Just rest and relax. Just

sit around and not HAVE to do anything. I need a week at a luxury spa or

something.

I think I'll have to settle for getting my nails done. That always makes me

feel a little better. That, and a pedicure. It's silly, but I feel good when

my nails look good. I don't feel so slobby.

Ha! It's so dumb!

Hugs,

[Guest guest]

More more more

Glad to hear that something was found out about 's ear. Sorry for the

pain and infection though.

If her muscles are spasming, she could be spasming not only the neck/ear

muscles, but closing off the eustachian tube muscles, therefore, the fluid in

them doesn't drain properly back into the throat/mouth area. If it's sitting in

there, it could get infected. Does have reflux at all?

Using q-tips can cause the wax to build up too and it can get pushed further

into the canal and/or push up against the ear drum. What color is her wax? My

has had horrible wax buildup even as an infant and HATES to have her ears

cleaned out - she says it hurts. She's supposed to use the wax removal kit to

get rid of her wax buildup but won't do it.... and then of course *I* forget to

remind her!

Having perfect teeth doesn't mean you don't have TMJ... it's the alignment of

the mandible in the joint of the temporal bone that gets affected. Lax ligaments

will cause problems too.

Me, I have a congenital bone defect in the mandible notch that goes into the

joint, then with the TMJ it's worse.

Our chiropractor has suggested ear candling for removing 's wax but I'm

too chicken to try it!!

[Guest guest]

Re: More more more

Hi,

I don't know if she has reflux, but she does have stomach problems - lots of

gas.

Ask her if she ever feels acid coming up into her throat/esophagus.... or

rning in her throat after eating. I get this quite frequently and I know my

gets it too..

It's just a regular thing - getting an ear infection - so it sounds like I'm

making a big deal out of nothing really.

An ear infection HURTSSSSSSSS!!!!! So it's a BIG deal...especially when it's

your child suffering!

But, it's just the accumulation of everything that's getting to me.

I understand completely....I go " nuts " when my has anything wrong with

her.... you have it times 3 plus yourself!!! It's very stressful....to say the

least!

It sounds like a gland or a bunched muscle that you were feeling. The

estachian tube is very small and goes from inside the mouth in the back of the

throat to the middle ear.....

I think I'll have to settle for getting my nails done. That always makes me

feel a little better. That, and a pedicure. It's silly, but I feel good when

my nails look good. I don't feel so slobby.

Ha! It's so dumb!

Go have your nails done in a smashing color too!!! Have fun!!! I love to get

my nails painted by someone else, but HATE the cuticle removal process and

getting my nails cut! I hate to cut them myself because I've had so many

injuries to the fingers and two of my nails got huge splinters under the

nailbeds....(talk about Chinese fingernail torture!

I have to keep my fingernails short as they break so easily and it's usually

right along the quick line that they break....I've been putting off cutting them

again....and they're long so they'll start catching on stuff and breaking...

ugh!

Put your meditation tape on and go take a nap!!!

Have you looked into softubs yet? I love mine!!!

[Guest guest]

In a message dated 3/12/2004 14:38:15 PM Pacific Standard Time,

monica-jb@... writes:

He's gonna have to start to deal with it. If I didn't worry about the kids

needing me, I'd go down and spend a few weeks with my dad, and let him deal

with it all. But, I just couldn't do that to my kids.

**************

Well, I have to tell you that I totally understand. My brother is the exact

same way...

He would rather bail than deal. But I have to think if his wife ever needs

him in a bad way he will JUST HAVE TO GET OVER IT!

You know you are enabling him right?

It is easier I understand, but YOU are sooooooooooooooooo in need of rest

right now.

Also ... it may be too that your kids KNOW you will always be there and so

they don't even ask their dad to help. You may be enabling them a bit too.. All

I am saying is that when a physician tells a patient they NEED.... to have

some down time even if they have to admit them to a resting facility they mean

it. It is just not said lightly or as a threat ... it is way to serious for

them to pull your chain by saying something like that. You have to start

SERIOUSLY thinking of bringing in a woman friend or neighbor or ..... well, ...

preferably your husband in on every little thing so that this person would be

equipped if you are gone....

~~ I know you think your kids need you and they certainly do but you

have to think about them in these terms too.... What if on the way to the

minimart you had an accident and you had to do therapy every day outside the

house,

was in a wheelchair for some time ... or in the hospital for more than a day

or two.... What if?

God knows I do not wish that for you but the fact is there would not be the

kind of knowledge base anywhere that could take over in your absence and this

scenario is very real right now!

Just think about it... I think going to stay with you Dad sounds like a

wonderful plan! If you feel that your husband could not handle it because you

have

seen him freeze.... It is because you have been there too and he knows you

will take over. But ... my goodness I am sure the first time he froze he would

thaw really quickly once it sunk in that his little girl/s needed him and he

had to act.

How far away is your Dad?

Debbi

[Guest guest]

Hi,

She never complains of the acid thing. has it. But, the dr said you

don't have to get heartburn to have acid reflux. doesn't get heartburn,

but he has GERD.

Thanks for the support. I feel like a whining brat. But, after 2 years of

constant crap, it starts to get to you, you know? I think I've actually done

pretty good lasting this long with it all.

I haven't looked into the soft tub thing. I want a huge hot tub, with the part

where you can lay down, with a gazebo thingy around it, on a patio. HA! I'll

never get it, I'm sure.

Anyway, Thanks again.

I habe about 1 1/2 hours till I have to go to the Gyn with , so I'm gonna

go lay down.

Hugs,

[Guest guest]

Hi,

Thanks, and you are not out of line. My husband really does need to be more

involved. No, he didn't go with me last night. Partially because he freezes up

with stuff. When he saw having a really bad back spasm, when she

hyperventilated, he was totaly frozen, and had a look of horror on his face.

Couldn't even talk.

And, when was in the hospital, he did take off work to help with the

other kids, and came to the hospital every day with whatever we needed, and to

releive me a couple times. But, any time anything happened, he left the room,

and wandered around the hospital. I think he just can't deal with it.

I do feel bad for him, cause he's the dad, and has control, but with all this

stuff, he must feel so out of control. He can't fix it. I think he thinks I

can handle it, becasue I've never complained before or asked for help.

Well, he's hearing it now, I'll tell you!

He's gonna have to start to deal with it. If I didn't worry about the kids

needing me, I'd go down and spend a few weeks with my dad, and let him deal with

it all. But, I just couldn't do that to my kids.

Hugs,

[Guest guest]

In a message dated 3/12/2004 20:21:41 PM Pacific Standard Time,

EDSLana@... writes:

I wish I could help you more, I really do. ........ but I worry for you and

your OWN health.

*****************

I should have said that too . It think I meant to but my short term

memory is ...... um .... I forget... LOL!

Debbi

PS: I think this Saturday or Sunday will be better... See if you can rent a

movie that EVERYONE would like, make/buy a bunch of popcorn or what ever snack

the family likes bring out some comfy pads and blankets pile them in the

living room, or bring in favorite chairs and have a home movie night that you

ALL

can have an equal share in the REST for at least the 2 hours!

Oh... I want you to know that you will be in my prayers.

[Guest guest]

In a message dated 3/12/2004 20:21:41 PM Pacific Standard Time,

EDSLana@... writes:

I wish I could help you more, I really do. ........ but I worry for you and

your OWN health.

*****************

I should have said that too . It think I meant to but my short term

memory is ...... um .... I forget... LOL!

Debbi

PS: I think this Saturday or Sunday will be better... See if you can rent a

movie that EVERYONE would like, make/buy a bunch of popcorn or what ever snack

the family likes bring out some comfy pads and blankets pile them in the

living room, or bring in favorite chairs and have a home movie night that you

ALL

can have an equal share in the REST for at least the 2 hours!

Oh... I want you to know that you will be in my prayers.

[Guest guest]

, have you ever given him printed articles to read about EDS so that

he can learn? That's what I do with my husband. I think most spouses feel

that unless we're in the hospital or dead, that we're able to handle

everything. I once ended up in a therapy support group, doctor's orders,

because he just wanted me to get out of the house once a week, and was

afraid I was going to have a breakdown if I didn't start doing something for

myself once a week. At the end of the support group, he asked to talk to me

AND my husband, and told us that I could either find something to do for ME

at least once a week, or I could seek a psychologist for 3 times the amount

of money once a week. Mike said that he WOULD see to it that I get out and

do something, and when we left, he told me to do the Taekwondo that I had

wanted to do. I don't think he really realized how bad it was for me - and

MY kids weren't ill!! You need to take good care of YOU before you can

really take good care of anyone else. I'm not trying to tell you what to

do, , but you sound very much like I did at that point in my life, and

I don't want you to have any type of breakdown, physical, mental, or

whatever.

If you can't afford it, ask a friend or neighbor to help out for an hour or

two a week if your husband cannot. But he DOES need to understand EDS, AND

all the pressure and stress that you deal with on a daily basis! You're

carrying a very heavy load, my friend, and you absolutely have to have a

break from it once in awhile!

When people become foster parents, they have a thing called respite, where

other foster parents take your kids (foster kids) for a weekend so that you

can have a break and just be with your own family. In Hospice care, they

also make sure that the caregivers get a respite from daily, full-time

caregiving. What I'm saying, , is that you need to get a break, at

least once a week. It will let you better deal with everything if you just

don't have to face it for a full day or full evening. Do whatever you want

to - sleep, read, take a bubble bath, see a movie, be with your hubby, etc.

TRY to find a way! If I were closer to you, I would do it for you in a

heartbeat! Where do you live? Do you have any friends or family that would

be willing to do this? Yes, most of the things are health things that they

may not be real knowledgeable in, but in most cases, it's probably not life

or death, and if it is, you can have a card there with important things

written down and leave a phone number where you can be reached.

I wish I could help you more, I really do. And I hope I haven't overstepped

our friendship here, but I worry for you and your OWN health. Please think

about it, OK?

Love Lana

[Guest guest]

Deb, I think you and I are thinking along the same lines., I hope you

don't feel as if we're ganging up on you! We're just concerned, OK??

Love Lana

[Guest guest]

Deb, I think you and I are thinking along the same lines., I hope you

don't feel as if we're ganging up on you! We're just concerned, OK??

Love Lana