Re: so, how's 's family, you aks?????

[Guest guest]

,

Thank God they caught this early. Isn't the one who has had the

collapsed lung stuff? Geez, you just can't get a break can you?

Hugs,

Sue

[Guest guest]

Yes, has had her lung collapse 3 times. They did surgery, and removed

part of her lung.

So, all the coughing really worries me. She still has issues with pain from all

the inflammation they caused purposely during the surgery (it sort of " hold " her

lung in place). Her lung did collapse once after the surgery. That was the

last time, and it was in August.

And, I've probably said it a million times here - she has re-curing UTI's,

(about 12 in the last 14 months - she's on a prophylaxis antibiotic now)

migraines, hypoglycemic, raynaud's, and she gets every single bug that is flying

around. Her immune system seems pretty weak.

She's had every test available. A spinal tap, 2 blood patches, neurological

tests, an IVP on her urinary tract. They couldn't control her pain after lung

surgery. The epidural didn't work. She went through withdrawals from all the

morphine. blah blah blah. You've heard it all before.

So, you see why I'm so suspicious about EDS in her even though she doesn't have

the hypermobile problem? I haven't listed everything here, but I've said it all

before, and I don't want to keep boring you all with it.

This morning her throat is really swollen, and full of puss. Gross.

She's a tiny little thing. She's 5'7 " tall, and only weighs 104lbs. She's

always been tall and thin. People have often made remarks about her being

anorexic, but they are stupid. She' doesn't look sunken in or anything. She's

just really thin. I was too when I was her age. She eats more than anyone can

believe. Like more than her dad.

Poor thing is 17. She'll be 18 in Sept. She's missed so much school she only

has sophmore credits. It's a long story. But, now we've got it figured out.

She has so much anxiety that she can't go back to her high school.

So, i'm enrolling her as a home school student, while she does some

correspondence courses for high school credit, until she gets into the school

for credit restoration, where she will be doing nova net courses to get her

credits. Then, she can go to the community college and do running start, and

get high school and college credits.

There is no way I'm gonna amke her go back to her high school at her age, and be

in sophmore classes. Sh'e be 18 in classes with 14-15 year olds!

And life goes on.............

[Guest guest]

Yes, has had her lung collapse 3 times. They did surgery, and removed

part of her lung.

So, all the coughing really worries me. She still has issues with pain from all

the inflammation they caused purposely during the surgery (it sort of " hold " her

lung in place). Her lung did collapse once after the surgery. That was the

last time, and it was in August.

And, I've probably said it a million times here - she has re-curing UTI's,

(about 12 in the last 14 months - she's on a prophylaxis antibiotic now)

migraines, hypoglycemic, raynaud's, and she gets every single bug that is flying

around. Her immune system seems pretty weak.

She's had every test available. A spinal tap, 2 blood patches, neurological

tests, an IVP on her urinary tract. They couldn't control her pain after lung

surgery. The epidural didn't work. She went through withdrawals from all the

morphine. blah blah blah. You've heard it all before.

So, you see why I'm so suspicious about EDS in her even though she doesn't have

the hypermobile problem? I haven't listed everything here, but I've said it all

before, and I don't want to keep boring you all with it.

This morning her throat is really swollen, and full of puss. Gross.

She's a tiny little thing. She's 5'7 " tall, and only weighs 104lbs. She's

always been tall and thin. People have often made remarks about her being

anorexic, but they are stupid. She' doesn't look sunken in or anything. She's

just really thin. I was too when I was her age. She eats more than anyone can

believe. Like more than her dad.

Poor thing is 17. She'll be 18 in Sept. She's missed so much school she only

has sophmore credits. It's a long story. But, now we've got it figured out.

She has so much anxiety that she can't go back to her high school.

So, i'm enrolling her as a home school student, while she does some

correspondence courses for high school credit, until she gets into the school

for credit restoration, where she will be doing nova net courses to get her

credits. Then, she can go to the community college and do running start, and

get high school and college credits.

There is no way I'm gonna amke her go back to her high school at her age, and be

in sophmore classes. Sh'e be 18 in classes with 14-15 year olds!

And life goes on.............

[Guest guest]

Thanks so much!

Just yesterday, when we were picking up 's meds for her bronchitis, we

got to talking with the pharmacist, who had noticed we are there a lot.

She asked about 's lung, and we said " Yea, when things are getting too

normal, likes to pop a lung just to make things more exciting " . That

got us all laughing pretty hard.

Those belly laughs are so good for the soul.

What else can you do? You'd be in the looney bin if you didn't joke about

things. Of course, it takes getting over the problem first, then you can look

back and laugh. And, after watching my daughter in the hospital, thinking she

was gonna die (I was actually planning her funeral), nothing else we've suffered

seem all that bad.

I think my husband is finally getting the picture. I keep telling him " Do you

see? EVERY SINGLE DAY, something happens with me or one of the kids " . So now,

I say it every time something happens. Even at 2:30 this morning when

woke me up with ear pain, wanting more meds, I said it. (They cahnged her

antibiotic, so it's taking longer than it should for it to get better. The

first one didn't work.)

So, he's starting to get it. He's always been apart from it all. Now I'm

MAKING him a part of it.

So, now I can say " DO YOU SEE? EVERY SINGLE DAY " , and we both just kind of

laugh.

That dr is at our local urgent care, which I hate to go to (got a lecture there

about " enabling " and drug seeking), but I had no choice. 's dr was gone

for the day, and I wasn't about to go back to the hospital. He is a jerk. I

avoid that place if at all possible.

Thanks again. You guys on this board have helped me more than you will ever

know. Thank god for technology!

Hugs,

[Guest guest]

Thanks so much!

Just yesterday, when we were picking up 's meds for her bronchitis, we

got to talking with the pharmacist, who had noticed we are there a lot.

She asked about 's lung, and we said " Yea, when things are getting too

normal, likes to pop a lung just to make things more exciting " . That

got us all laughing pretty hard.

Those belly laughs are so good for the soul.

What else can you do? You'd be in the looney bin if you didn't joke about

things. Of course, it takes getting over the problem first, then you can look

back and laugh. And, after watching my daughter in the hospital, thinking she

was gonna die (I was actually planning her funeral), nothing else we've suffered

seem all that bad.

I think my husband is finally getting the picture. I keep telling him " Do you

see? EVERY SINGLE DAY, something happens with me or one of the kids " . So now,

I say it every time something happens. Even at 2:30 this morning when

woke me up with ear pain, wanting more meds, I said it. (They cahnged her

antibiotic, so it's taking longer than it should for it to get better. The

first one didn't work.)

So, he's starting to get it. He's always been apart from it all. Now I'm

MAKING him a part of it.

So, now I can say " DO YOU SEE? EVERY SINGLE DAY " , and we both just kind of

laugh.

That dr is at our local urgent care, which I hate to go to (got a lecture there

about " enabling " and drug seeking), but I had no choice. 's dr was gone

for the day, and I wasn't about to go back to the hospital. He is a jerk. I

avoid that place if at all possible.

Thanks again. You guys on this board have helped me more than you will ever

know. Thank god for technology!

Hugs,