Re: Feeling really lost, dont know what to do

[Guest guest]

Stacey,

Will keep you in my prayers and will send healing thoughts to help you get

through this difficult time. Definitely discuss this with your GP at

school.....maybe he can help you. Also, having some literature about EDS might

help

others understand about it. You should also be providing info for your

doctor......doesn't sound like he knows too much about it. A strengthening

program is

helpful to some, but even so he should not discontinue pain medicine if you

need it. Hang in there and hope you find some relief soon.

Hugs,

Sue

[Guest guest]

> Hi everyone

>

> I apologize in advance because this is going to be a very bitter

and

> whiny post.

Stacey, don't apologize, we're here for you and everyone else that

needs to whine, yell, cry, etc. I'm wondering where you live? I

wonder if there are any other members close to you that have a doctor

they like and trust? Have you asked Jill if there is a physician

close to you that you could try? I know exercise is important also,

and at times, so is physical therapy; but I've never done well with

them either! I'm not sure I've ever had a real knowledgeable physical

therapist, and NO ONE at the gym places know about EDS or even bother

to look it up! Like you, I've done more damage than good as far as

exercise in the past. It's so hard to know where the 'stopping

point' is, don't you think?

Also, Stacey, I'm a Mom, and I consider both of my children to be

strong - stronger than I am most of the time; but there have been

times, and I know there will be more, when I was THEIR strength!

Perhaps if you just talk to your parents and let them know your

concerns, it will be all you need - just for them to listen and be

aware of them. They may be stronger than you realize, Stacey, and if

you begin talking to them, you should be able to tell after a few

minutes, how they're dealing with it. If you think they're not

dealing well, you can drop it.

As far as the friends go, if they think you're just being lazy or

whatever, then they're not really close friends. If they are close

to you and respect you, give them some information about EDS to read

and ask their input! It would probably be a real learning session for

them! Seek out those that you can really open up to; and if there

aren't any, find someone on this list you can relate to that you can

call once in awhile, or they can call you. I'm willing, but I'm OLD

compared to you! But if you ever want to talk, I'd be glad to. I

can send you my phone number if you're interested, or you can send

yours to me (EDSLana@...) as I have lots of free minutes on my

cell phone.

Hang in there.

Love Lana

[Guest guest]

Hi Lana

Thank you so much for your speedy reply. It means so much to me! I

am from the Kitchener/Waterloo area during the school year and the

Sarnia area during the summer months. This is one thing that makes

finding help an issue as my home address is not consistent. I do

have a GP on campus that I trust, however she does not have EDS

knowledge, so can't really help with much beyond a general health

perspective. I know I should be telling my parents what is going on

I jsut really dont like feeling like a burden to them. Neither of

them have EDS (My dad has a very very mild case that has never caused

him any real problems) so they dont really understand, and admitted

this weekend that there have been many times when they thought i was

just 'faking' problems for the attention. Anytime I try to bring it

up my dad changes the subject and my mom pretty much just says well i

dont know what to do. I am lucky enough to have a very supportive

boyfriend. I dont know how I would have gotten through the last few

months without him. He is a real lifesaver however I feel really

guilty for piling this all on him because that doesnt really lead to

a normal relationship (and again i feel like i am becoming a

burden). I dont think any of my other friends have any real interest

in learning about EDS to understand what I am going through. Thank

you so much for your offer to talk, it means a lot to me Do you

have any of the online instant messaging programs? I pretty much

have all of them

Stacey

By the way, im really bad with remembering details right now, what

type of EDS do you have? Do your kids have it? How old are they?

[Guest guest]

Hi Lana

Thank you so much for your speedy reply. It means so much to me! I

am from the Kitchener/Waterloo area during the school year and the

Sarnia area during the summer months. This is one thing that makes

finding help an issue as my home address is not consistent. I do

have a GP on campus that I trust, however she does not have EDS

knowledge, so can't really help with much beyond a general health

perspective. I know I should be telling my parents what is going on

I jsut really dont like feeling like a burden to them. Neither of

them have EDS (My dad has a very very mild case that has never caused

him any real problems) so they dont really understand, and admitted

this weekend that there have been many times when they thought i was

just 'faking' problems for the attention. Anytime I try to bring it

up my dad changes the subject and my mom pretty much just says well i

dont know what to do. I am lucky enough to have a very supportive

boyfriend. I dont know how I would have gotten through the last few

months without him. He is a real lifesaver however I feel really

guilty for piling this all on him because that doesnt really lead to

a normal relationship (and again i feel like i am becoming a

burden). I dont think any of my other friends have any real interest

in learning about EDS to understand what I am going through. Thank

you so much for your offer to talk, it means a lot to me Do you

have any of the online instant messaging programs? I pretty much

have all of them

Stacey

By the way, im really bad with remembering details right now, what

type of EDS do you have? Do your kids have it? How old are they?

[Guest guest]

Hi Lana

Thank you so much for your speedy reply. It means so much to me! I

am from the Kitchener/Waterloo area during the school year and the

Sarnia area during the summer months. This is one thing that makes

finding help an issue as my home address is not consistent. I do

have a GP on campus that I trust, however she does not have EDS

knowledge, so can't really help with much beyond a general health

perspective. I know I should be telling my parents what is going on

I jsut really dont like feeling like a burden to them. Neither of

them have EDS (My dad has a very very mild case that has never caused

him any real problems) so they dont really understand, and admitted

this weekend that there have been many times when they thought i was

just 'faking' problems for the attention. Anytime I try to bring it

up my dad changes the subject and my mom pretty much just says well i

dont know what to do. I am lucky enough to have a very supportive

boyfriend. I dont know how I would have gotten through the last few

months without him. He is a real lifesaver however I feel really

guilty for piling this all on him because that doesnt really lead to

a normal relationship (and again i feel like i am becoming a

burden). I dont think any of my other friends have any real interest

in learning about EDS to understand what I am going through. Thank

you so much for your offer to talk, it means a lot to me Do you

have any of the online instant messaging programs? I pretty much

have all of them

Stacey

By the way, im really bad with remembering details right now, what

type of EDS do you have? Do your kids have it? How old are they?

[Guest guest]

I am from the Kitchener/Waterloo area during the school year and the

Sarnia area during the summer months.

--------------

(1) Which state? Not sure on the cities where they are.

(2) You have expressed interest in the energy stuff in the past.

Feel free to bounce questions by me off-list at any time if you

don't want to go through open post. If you can't figure it out from

the posts, it is real easy. mike @ uggen.net (just remove the

spaces).

[Guest guest]

Hi Mike

Sorry those are both in Ontario, canada (always forget about people

in other countries). At this point I dont really know what to ask

about the energy stuff but once I figure it out I will be sure to

email you (and possibly even before than). Thank you for your reply

Stacey

[Guest guest]

Hi Mike

Sorry those are both in Ontario, canada (always forget about people

in other countries). At this point I dont really know what to ask

about the energy stuff but once I figure it out I will be sure to

email you (and possibly even before than). Thank you for your reply

Stacey

[Guest guest]

Hi Mike

Sorry those are both in Ontario, canada (always forget about people

in other countries). At this point I dont really know what to ask

about the energy stuff but once I figure it out I will be sure to

email you (and possibly even before than). Thank you for your reply

Stacey

[Guest guest]

> Hi Lana

>

Thank you so much for your offer to talk, it means a lot to me Do

you have any of the online instant messaging programs? I pretty much

have all of them

>

> Stacey

>

> By the way, im really bad with remembering details right now, what

> type of EDS do you have? Do your kids have it? How old are

they?

Hi Stacey,

First of all, before I forget, I have Yahoo IM (Buckysmom - I think,

I'll have to look-DUH!) and AOL IM (LanaLoosey) and MSN IM and I

can't remember that one either, but I'll email it to you tonight! If

you ever see me on, please feel free to IM me.

I have Hypermobile EDS. Both of my kids have a few symptoms of it,

but my daughter is worse. She's not nearly as bad as me, but has has

a few problems. She's not really medicated for anything but IBS and

GERD right now. She's 25 and is an RN in Kearney, NE. My son is 29

and isn't medicated at all and lives in Omaha, where we live.

I feel for you, Stacey, because that's quite a burden to carry at

your age with no one to really talk to. If you're comfortable

sharing your phone number, please send it to me at EDSLana@...

tonight, OK? I think my MSN IM may be that! EDSLana! God, I must

sound like an idiot! Well, I AM...sometimes! LOL!

Love Lana

[Guest guest]

Hey Stacey-

Wish I could send you some words of wisdom or something, but in all honesty, I'm

in the same boat as you right now.

Just want you to know that I wasn't ignoring you. I'm just not feeling to well

now. Emotionaly or physically.

You hang in there, and I will too,

Hugs,