Re: question for my EDS book

March 8, 2004

> What would you really like you family to understand about you and

how EDS affects you?

I would LOVE my family (and friends) to understand that EDS is a

condition that changes. Just becuase I was ok 2 minutes ago doesn't

mean I am now, just beacuse I was holding my shoulder and asking to

be taken to the ER because I can't get it back in doesn't mean my

knees, hips (insert ANY joint here) isn't also hurting. Just because

my shoulder is/was out doesn't mean my knee (insert any joint) isn't

ALSO out. Just beacuse my joints aren't OUT doesn't mean they don't

HURT, aren't WEAK or I am not scared that they will go out.

Just because I could walk around the shops yesterday doesn't mean I

can make it to the mailbox today. This contition changes all the time

I do NOT know in advance what will be hurting or coming out and I

cannot always make advance appointments/outing as I am unsure how I

will be that day.

I know that I sometime complain and whinge about this hurting or that

hurting BUT what I am saying isn't even a 10th of what I am feeling.

Pain is NOT my only issue, I sometimes find it physically exhausting

just to get up and get a drink or go to the toilet, or just to get

up. Sometimes I am so tired/lethargic that I need to have a sleep

during the day and I tend to sleep longer in the mornings because my

nights sleep is broken by pain and dislocations and just being unable

to get to or stay asleep.

I know that it seems like I am always sick/injured (I am) BUT there

is NOTHING I can do about and the irritation you feel about this is

NOTHING AT ALL compared to what I feel. I hate the fact that at 32

yrs old I can't do what I want to, have enought ortho junk to open an

orthotist store (or build myself an exoskeleton with spares), have my

life revolve around medical people and appointments, am known on

sight and by name at the local ER and by some of the ambo's.

Sharon

p.s Is this the sort of thing you want I can keep going and going etc.

I have been having a rough time lately and my partners comments

of " you are always sick " doesn't help, I try to explain to him that I

am not always sick (well I guess I am really between sick, injured

and in pain it covers me pretty much 24/7/365+) and even though I am

like this all the time it doesn't always stop me from doing what we

want and that the degree of what I am feeling etc changes sometimes I

feel so sick that if I move I think I am going to vomit.

Sharon

March 8, 2004

> What would you really like you family to understand about you and

how EDS affects you?

I would LOVE my family (and friends) to understand that EDS is a

condition that changes. Just becuase I was ok 2 minutes ago doesn't

mean I am now, just beacuse I was holding my shoulder and asking to

be taken to the ER because I can't get it back in doesn't mean my

knees, hips (insert ANY joint here) isn't also hurting. Just because

my shoulder is/was out doesn't mean my knee (insert any joint) isn't

ALSO out. Just beacuse my joints aren't OUT doesn't mean they don't

HURT, aren't WEAK or I am not scared that they will go out.

Just because I could walk around the shops yesterday doesn't mean I

can make it to the mailbox today. This contition changes all the time

I do NOT know in advance what will be hurting or coming out and I

cannot always make advance appointments/outing as I am unsure how I

will be that day.

I know that I sometime complain and whinge about this hurting or that

hurting BUT what I am saying isn't even a 10th of what I am feeling.

Pain is NOT my only issue, I sometimes find it physically exhausting

just to get up and get a drink or go to the toilet, or just to get

up. Sometimes I am so tired/lethargic that I need to have a sleep

during the day and I tend to sleep longer in the mornings because my

nights sleep is broken by pain and dislocations and just being unable

to get to or stay asleep.

I know that it seems like I am always sick/injured (I am) BUT there

is NOTHING I can do about and the irritation you feel about this is

NOTHING AT ALL compared to what I feel. I hate the fact that at 32

yrs old I can't do what I want to, have enought ortho junk to open an

orthotist store (or build myself an exoskeleton with spares), have my

life revolve around medical people and appointments, am known on

sight and by name at the local ER and by some of the ambo's.

Sharon

p.s Is this the sort of thing you want I can keep going and going etc.

I have been having a rough time lately and my partners comments

of " you are always sick " doesn't help, I try to explain to him that I

am not always sick (well I guess I am really between sick, injured

and in pain it covers me pretty much 24/7/365+) and even though I am

like this all the time it doesn't always stop me from doing what we

want and that the degree of what I am feeling etc changes sometimes I

feel so sick that if I move I think I am going to vomit.

Sharon

March 21, 2004

Hi --

My name is Patti and I have EDS IV. I was diagnosed two years ago. I have one

sister and one niece. My dad is still with us, but my mom passed away in her

early 50's.

So far, I am the only one who has been diagnosed with VEDS (although the doctors

believe my mom had it). This is quite a question, but here goes.

To my family:

When I received my diagnosis, I was devastated. I felt like I had been handed a

death sentence which could be carried out at any moment. It has been so

difficult trying to come to terms with this, and ,although I know that everyone

dies, it is a little disconcerting to have it staring you in the face all the

time. It is very real - not something that, at least for me, I can ignore. I

can't put it back in the box. Please don't stay away from me - don't push me

away. I know, for those of you who choose not to be tested, you face

uncertainty and that is scary. I am scared, too.

There will be times when I am sad and times when, I'm sure, it seems like I

don't think about VEDS at all. What I need you all to understand is that,

whether I show it or not, it is always in my mind. It is part of who I am and

that will not change. I do not need constant reassurance and attention - nor do

I wish it. What I would ask is for you to be there when my fear and sadness

pushes through and becomes too much to handle - a hug, a shoulder, an ear just

to listen. Tell me a joke, a funny story --- I just need to know that I am not

alone. I so much want to be a part of my family again - to share and cry and

laugh together about all the everyday, ordinary things that go on in our lives.

To try and deal with VEDS is, by far, the hardest thing I have had to do in this

life. But, I think it would be so much harder to do without family.

Well, , I think that's all I can write right now. Hope it is what you are

looking for.

Take care and I hope all is well with you.

Love, Patti

question for my EDS book

My fellow EDSers,

Some of you may already know that I have been writing a book entitled Living

with Ehlers Danlos Syndrome. Progress has been slow, and sometimes halted

temporarily due to my own progression of EDS manifestations and medical issues

(and my EDSer sons' as well). However, I am still working on it. I still want

to include any information from other EDSer's which you might like to volunteer.

I can use your name (first, last, both: your pick) or not (your call). It is to

be a very " human " book of personal experiences and coping tools. Another dear

wonderful EDSer friend, " Cindylouwho " , aptly suggested that I ask each of you

the following question:

What would you really like you family to understand about you and how EDS

affects you?

Love,

~LoneStarRose~

(~~)

March 21, 2004

Patti, I hope they are there for you as well! If they are busy, or

unavailable, PLEASE, let US know - you KNOW we will ALWAYS be here for you

no matter what! At lease someone on this list is always available I

believe! OK? Just know that in the meantime, I include all my EDS friends

in my prayers nightly, because you are all so important to me. If prayers

can bring this request to fruition, it will happen.

Love Lana

Re: question for my EDS book

Hi --

My name is Patti and I have EDS IV. I was diagnosed two years ago. I have

one sister and one niece. My dad is still with us, but my mom passed away

in her early 50's.

So far, I am the only one who has been diagnosed with VEDS (although the

doctors believe my mom had it). This is quite a question, but here goes.

To my family:

When I received my diagnosis, I was devastated. I felt like I had been

handed a death sentence which could be carried out at any moment. It has

been so difficult trying to come to terms with this, and ,although I know

that everyone dies, it is a little disconcerting to have it staring you in

the face all the time. It is very real - not something that, at least for

me, I can ignore. I can't put it back in the box. Please don't stay away

from me - don't push me away. I know, for those of you who choose not to be

tested, you face uncertainty and that is scary. I am scared, too.

There will be times when I am sad and times when, I'm sure, it seems like I

don't think about VEDS at all. What I need you all to understand is that,

whether I show it or not, it is always in my mind. It is part of who I am

and that will not change. I do not need constant reassurance and attention

- nor do I wish it. What I would ask is for you to be there when my fear

and sadness pushes through and becomes too much to handle - a hug, a

shoulder, an ear just to listen. Tell me a joke, a funny story --- I just

need to know that I am not alone. I so much want to be a part of my family

again - to share and cry and laugh together about all the everyday, ordinary

things that go on in our lives.

To try and deal with VEDS is, by far, the hardest thing I have had to do in

this life. But, I think it would be so much harder to do without family.

Well, , I think that's all I can write right now. Hope it is what you

are looking for.

Take care and I hope all is well with you.

Love, Patti

question for my EDS book

My fellow EDSers,

Some of you may already know that I have been writing a book entitled

Living with Ehlers Danlos Syndrome. Progress has been slow, and sometimes

halted temporarily due to my own progression of EDS manifestations and

medical issues (and my EDSer sons' as well). However, I am still working on

it. I still want to include any information from other EDSer's which you

might like to volunteer. I can use your name (first, last, both: your pick)

or not (your call). It is to be a very " human " book of personal experiences

and coping tools. Another dear wonderful EDSer friend, " Cindylouwho " , aptly

suggested that I ask each of you the following question:

What would you really like you family to understand about you and how EDS

affects you?

Love,

~LoneStarRose~

(~~)

March 21, 2004

Thank you so much, Lana.

I am so grateful to belong to this group -- the people here have been a real

life line for me. Thank you again.