Barb is my hero!!!! - Was: Re: Aase Marit! Cheers to my hero!!

[Guest guest]

Hi dear ,

Nice to " see " you again!!! I am sitting here with tears in my

eyes... You have a very special place in my heart too!!! You know,

you have no idea how nice it was for me to be able to write to you

and offer a possible answer. I wrote pretty many people back then,

asking my " Just in case questions " ... He-he... I could not help

myself... I just had to do it, could not live with the thought that

so many were like me and went on for years and years not knowing what

was wrong. During I think 6 months, at least 4 wrote me back telling

me they had been diagnosed with EDS. At least one more of you are

here on this list now, that is so great!!!! To begin with they all

posted similar postings as you did on the alt.support.arthritis

newsgroup...

It made me feel so good that I sort of could try to re-pay what I had

received myself from Barb Uggen... I feel exactly the same way about

Barb. She will always have a special place in my heart... I am so

grateful for what she did for me!!!. I can't imagine where I would be

if it weren't for her... She was the first one I came in contact

with when I first went on the net searching, back in February 1997. I

am sure I told you this before, but back then I had a really tough

time, I felt so bad and had no chance to even do my very physically

easy job. I was on a sick leave and felt so bad, was in so much pain

and was lying down most of the time in my recliner. I couldn't do a

thing.

My Rheumatologist had me admitted to hospital to start new

medication, but the hospital docs said there wasn't especially much

activity in my Psoriatic Arthritis, so they " let me go " just like

that. They didn't even attempt or consider that other things could be

causing me to be in such a bad state, they just suddenly presented me

with their results and before I even could think through what they

had said, I was on my way back home one Friday afternoon. It felt

like being dropped into a black hole. I felt downright violated by

how they acted, even if they were polite and nice enough (I know too

many of you have experienced the opposite)... Luckily my RD let me

come already the same day to talk with him, and he was so mad at them

and also disagreed a lot with them...

But the way they had treated me made me unsure about myself, I had

thoughts doubting myself and how I felt because of what they had

said. I felt so sad and at the same time so angry at them. So I

simply went on line to find out if there could be something else

going on. I was thinking that either I must be having something wrong

with my head, or something else had to be going on physically...

I started by searching for info. on Hypermobility, as I knew I had

that. On the way searching I found information about EDS and got in

contact with Barb. I think she was volounteering for the EDNF back

then. Barb was the one that patiently answered all my questions, told

me " that is common " , " I am like that too " etc. and she assured me

that it would be OK to join the mailing list without a diagnosis. I

would never have dared if it had not been for her telling me that it

would be perfectly OK. I would never have found my answers if it had

not been for her and also later the support of this list (or back

then we were all on another list before we " moved " here)... It is so

fantastic how we can help each other out!!!

It is really too bad that I can't follow the alt.support.arthritis

newsgroup anymore. So many who have joint pain and can't figure out

what is wrong, automatically think about some kind of arthritis. So

they go there. Some will just lurk and hope that somebody mention

something that sounds right for them and maybe e-mail the poster.

Many will do as you did, , post asking very general questions.

Most of you guys never even thought of being more limber than most

people. Some had been told they were hypermobile or double-jointed,

but many had never even been told that, and it sure is not easy to

think that your joints are working in a funny way - after all we

don't have anything else to compare with... If I get the time and

energy to do it some day again, I would start posting a general and

easy to understand posting about EDS there maybe once or twice a

week. I did that a bit in the end too, so that hopefully some would

read it. I can't remember, but I think I posted under the subject " Do

you have joint pain and don't know why? " or something like that...

Then I listed the questions I wrote to you the first time too as well

as some general info about EDS...

Oh well... Sorry this got so long... You sure reminded me about

something I care about... And you sure reminded me about how

wonderful the Internet is giving us the opportunities of finding out

about thing and make us able to be together like this... There are so

many fantastic EDS people. I feel truly blessed for having had the

opportunity to get to know you guys.

Heck, ever since 1997 I have not gone for Climatotreatment for my

Psoriasis and Psoriatic Arthritis, because financially I just can't

do both that and go to the US for the EDNF conferences as often as

possible (3 times starting in 1998, this summer will be no. 4)... I

am active in the Norwegian Psoriasis Association, since last Oct. I

have been the President there. So I meet a lot of Psoriatics. You

have no idea how often I am asked why the heck I haven't gone for

treatment these past years. They think it is quite odd, since I need

the treatment. There is only a co-pay for going, but it costs to go

away for 3-4 weeks even if a lot of it is covered. So I have to make

a choice, and to me it has been easy. I am afraid that I have become

quite addicted to the EDNF conferences. To me it is really fuel to

keep going in my every day life. And actually I can't think of

anywhere I get such support for going to these conferences as amongst

the ones I am closest to in the Psoriasis Association. They think it

is fantastic that I go, even if it every year is at the same time as

the yearly summer camp we have... They don't give me any problems

saying no to the camp so often though. I guess it is quite obvious

to them how much these conferences mean to me... To me it is so

fantastic to meet in person some of you who are my " EDS-family " now

and then. Coming to the conference is like coming home, I just love

going.

Take care !!!!

hugs,

Aase Marit