Re: update on Crystal

July 18, 2004

Tammy,

My heart goes out to you and Crystal. Her condition is a tough one

at this stage, I can't believe the doctor will send her home. I'm

praying heavily for you both. Your daughter sounds so strong in her

spirit. Does she go to church or is of a particular faith? I hope

and pray her bleeding will stop.

I am the mother of a 17 yr old boy with EDS, the type isn't clear,

but it's more involved than the geneticist says. He is on SSI

disability for " Total Body Dysfuction " . That says a lot in itself.

I go through some of the same things with my son: that he doesn't do

things when he should and if I don't put pressure on him his little

sister does. She's 13 now and things just have to be 'fair'.

He doesn't talk about his feelings very much and I don't really know

how he's feeling unless his pain or ill feeling stops him from doing

what he wants. It's hard to get him to do things he needs to do to

take care of himself or simple family chores that don't take very

long or much effort. Recently he told me he has been using computer

programming and games as an escape from his feelings about all the

losses in his life since he was about 12 years old. That's when he

began getting sick too. There have been so many losses for our

family over the years, and he didn't grieve much when we did.

This is a very tender time for many of us here on this list~ sharing

our hearts or even just talking about whatever we wish is a good

thing to do at a time like this. I'm glad she has such a loving and

caring Mom. Crystal must love you a great deal, so please don't be

hard on yourself, OK? {{{{{{{HUGS}}}}}}}} I'll be here when I get

up if isn't playing a game in the morning...I haven't gone to

bed yet. God bless you and your family.

~Duv ()

> No one has to read this i just thought I'd kinda update you on

> Crystal. The past few days she has not been herself she is

normally a

> very perky person always willing to help. I've noticed shes just

> stayed in bed alot and shes not eating much at all. She has been

> throwing up alot and this morning I caught her and she was

throwing

> up blood. I took her to the emergency room and her Dr's are still

not

> sure what it is but they said they know it has to do with her EDS.

> Her heart rate has been low her Dr's say she has just fought her

> whole life with her cancer she had and all and she is just

exausted

> her body just doesnt want to fight hard anymore. But Crystal want

to

> come home and she fights her Dr's till she gets her way. So I'll

> bring her home in the morning. Her dr did tell me though she

really

> should stay in touch with others that have EDS and all of you are

the

> only ones i know. She has never really stayed in touch with anyone

> particular. Her dr says it's just hard for her to explain to all

of

> us even him about her EDS because we dont have it and dont knpw

how

> she feels or what it's like. and we know there is alot she wont

tell

> us shes just not one to complain. I know she'll get on the

computer

> when she gets home tomarrow I'm just hoping she'll talk to you

guys

> more or maybe if someone emails her I'm not sure i just know she

> needs the support I and her family and Dr's try but not having EDS

> makes it hard to understand at times. I get angery ate her at

times

> for not doing something forgetting that she is different because

her

> sydrome until she walks is not very visible on the outside. i just

> feel awful when i do that because she never fights me back. But

just

> thought if someone had the time they could throw her an email but

if

> not i understand.

> Thanks, Tammy

July 18, 2004

Tammy --

I feel so badly for both of you and all of your family. I hope the dr's find

out what is going on with Crystal and that she is feeling better soon.

I will be keeping all of you in my thoughts and prayers.

Love, Patti

update on Crystal

No one has to read this i just thought I'd kinda update you on

Crystal. The past few days she has not been herself she is normally a

very perky person always willing to help. I've noticed shes just

stayed in bed alot and shes not eating much at all. She has been

throwing up alot and this morning I caught her and she was throwing

up blood. I took her to the emergency room and her Dr's are still not

sure what it is but they said they know it has to do with her EDS.

Her heart rate has been low her Dr's say she has just fought her

whole life with her cancer she had and all and she is just exausted

her body just doesnt want to fight hard anymore. But Crystal want to

come home and she fights her Dr's till she gets her way. So I'll

bring her home in the morning. Her dr did tell me though she really

should stay in touch with others that have EDS and all of you are the

only ones i know. She has never really stayed in touch with anyone

particular. Her dr says it's just hard for her to explain to all of

us even him about her EDS because we dont have it and dont knpw how

she feels or what it's like. and we know there is alot she wont tell

us shes just not one to complain. I know she'll get on the computer

when she gets home tomarrow I'm just hoping she'll talk to you guys

more or maybe if someone emails her I'm not sure i just know she

needs the support I and her family and Dr's try but not having EDS

makes it hard to understand at times. I get angery ate her at times

for not doing something forgetting that she is different because her

sydrome until she walks is not very visible on the outside. i just

feel awful when i do that because she never fights me back. But just

thought if someone had the time they could throw her an email but if

not i understand.

Thanks, Tammy

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

July 18, 2004

How could we not read it. Even if I didn't have EDS I would have read this

anyways. Please don't be hard on yourself. You can make her do something she

doesn't want too. My prayers are with you and Crystal.

When my dad's anurism ruptured in his abdomen, he died 3 times on the way to the

hospital. They brought him back a 4th time in the ER. They asked my mom if she

wanted them to keep him alive? He would be a vegetable, but they thought they

could keep him alive. But they also said they didn't know for how long. This was

some of their first EDS experience. Needless to say my mom knew my dad would

hate not being complete and she told them if his heart stops again, to just let

him go. It was the hardest thing my mom ever had to do. I hated her for it then.

But now I know better. That is one of my biggest scares right now. My dad didn't

seem to have a problem till he hit 36. He died at age 38. His side of the family

all died from ruptured aneurisms between the ages of 38 and 42. They say we

don't have type 4 EDS, but what other type has aneurisms? So we are a different

breed I guess. Right now with all the back and leg problems I've been having I

wish they could cute my head off and put it on a healthy body......lol One

point when I had knee surgery last year I wasn't healing fast. I wound up

getting blood clots. OUCH. I had so bad wanted them to cut my leg off.

I don't know why I decided to share this. I guess since we are all opening up.

Sorry for rambling on. My prayers are with you both and the family.

HUGGLES<

Grace