Re: Introducing myself/Tanja/Welcome/Support & of course, tattoos

[Guest guest]

Hi Tanja:

Welcome to our CEDA/EDNF/EDS, etc. family. I'm . Yes, the one that

everyone has been sort of making up stories about. True, I wasn't so sure it

was

a good idea, EDS-wise to have a tatto done, BUT I must confess, these nutty

gals have got me thinking about a tatto, but I don't want you to be scared off.

I did actually, sometime ago jokingly,

threaten to pay this tatoo guy off to leave town, but as I'm sure you can

imagine, I surely didn't say I was going to smuggle rope into Buffalo, but I

wouldn't put it past this crowd to try to get me drunk!!!!

BUT, this truly is the most amazing crowd of men, woman & children & you have

surely come to the right place. I'm sad that you won't be able to join us

this year, but hopefully you will at some point in the future. Really, we are a

fun yet serious bunch of folks, who truly work very hard on trying to " be

there " for each other unconditionally & through the group in the U.S., all of

you

guys up there in Canada, the EDNF & the new edng.org website, there isn't

anything, just about. that you can't find out. And, if there's something that

we

don't know yet, you can be sure that there will be dozens of people standing

at your side that will be there to help you. Once again, welcome to the

family.

And though we joke around some, we are very serious when it come to true

medical, emotional & support issues. But I've always said & still do, that you

can't ever lose you sense of humor. There are so many very serious issues, real

ones that become part of your life as you live with EDS, yet I feel one

mustn't lose the " fun " part of thier lives. It makes it much easier to cope

with it

all, as does the support of these groups that have sprung up all over.

As to your question about pain medication....... I'd be more than happy to

talk to you about it & if you want to, we can do it offline. But, you have

asked a very generalized & broad question. Some of us do well with Tylenol,

Ibuprophen, etc., some with Darvon, Percocet & others with high level narctoics,

such as Morphine, Duragesic, Dilaudid, etc. in all different forms. Also, many

of us take different types of muscle relaxants, as often a lot of the

associated pain actually comes from muscle spasms, in which case you could take

all

of the pain medication in the world, but it won't help as much as a muscle

relaxant. And, many of us take a different class of durgs that used to be used

only for depression, but also have significant pain relieving qualities, as well

& also do take them for depression. I truly believe that no one can survive

& do it well, on a truly healthy basis, with a long, chronic, degenerative,

progrssive & often painful condition on a long term basis, without some kind of

help. The head, is just as important as any other part of the body & needs to

be treated, just like a knee and/or a shoulder does. And I have no problem,

yes here in an open forum, saying that at times over the years, for varying

lengths of time, I have sought counseling both on my own & with my husband. So,

if you can be more specific about medications & your needs, I'm sure you'll

get a lot of input. I would however say that it may serve you well to get

hooked up with a pain specialist. It is my own personal opinion & this isn't

meant

to be a sugesstion, a referral or advice, but I feel, and BTW, this comes

from a nurse & I have done counseling myself, but there's that old addage,

physician, treat not theyself & it goes for nurses too! that orthopedic surgeons

are

great for ortho surgery,

internists for medical issues, but when it come to creating a plan of care

for pain control, just as in any specialty, I feel it's best to go to someone

who specializes in the area that you need.

So, we're here for you, please be in touch. Welcome,

In a message dated 2/26/2004 2:36:00 PM Eastern Standard Time,

bodiedk@... writes:

Hi every one

My name is Tanja Nedergaard, I have been in this group now for about 2 weeks.

Reading all the mails everyday was hard to begin with but I just tjeck my

mail at least twice a day.

Well I'm 24, married, live in Calgary, so if there's anyone from Calgary, I

would love to meet You. Because I wont be able to go to the conference in

Buffalo.

I was diagnosed with the EDS III 10 days before I gave birth to my son, He is

now 19 months.

My husband is also very flexible, but he does not have any problems so he is

probably just hypermobile.

I have a lot of problems with my shoulders, hip, back, neck, ancles and

wrists.

I am trying to find some medicine to cope with my cronic pain, and I want to

get off the Neurontin, it doesn't work for me.Does any of You have suggestions

that I can give my doctor. She is a really good doctor, if I have any

suggestions she tjecks them out and tells me what she thinks about it/ them.

And before I go...I just want to say Hi to Aase Marit and Cindy C, thank You

for being so sweet to me.

Tanja, Calgary