Fw: Norway saying hi :)

[Guest guest]

Got this from Aase Marit and am passing it along for anyone who is

interested. Please note her new email address.

-Barb

Norway saying hi

> Hi dear Barb,

>

> How are you doing???? I have been thinking about you so much!!!

> Partly just because I have been thinking of how you are doing, partly

> because I feel so awful that I managed to forget that flag for the

> second time, until it was too late... My brain was just not working

> well. Finally I found out that I have been going around with a silent

> pneumonia, now for 11 months. Obviously I have had such congested

> lungs that I didn't get enough air. So my heart was racing most of

> the time at around 110 but also up to 130 at rest. Well, it could

> have been much worse, but it was so annoying, not just that it went

> fast (I am used to that!), but that it was beating so hard, you never

> get a silent moment... I also had a low potassium, but my doc means

> that is not the problem. I will ask him to check it again though,

> because I was also very " shivering " and I just read a posting on the

> list about this, and my levels were the same as hers and I was told

> it wasn't that bad, " just eat some more bananas " ... I have been

> having low grade fevers on and off since February last year though,

> but maybe a combination? Anyway, I felt awful for soooo long, but as

> usual I just hoped it would go away... Well, it didn't work, and in

> the end I could be trying to go to work, made it to the bathroom but

> didn't get much done, I was so exhausted. So I went on a sick leave,

> but went back to work just now. Now I am having fevers again though,

> so I am going back to my doc on the 9th... I also bought half the

> health food store, he-he... Oh well... In the middle of it, I have

> had a few challenges as the new president of the norwegian psoriasis

> association. There's a lot to learn when you're new in such a

> " job " ... It is a lot of fun, but it would be great to get some

> energy!!! Sure makes things a lot easier....

>

> Anyway... As you see, I got a new e-mail address.... It is not often

> I have had the time or energy to read the list, but now I was reading

> a bit and saw the thread about the theatres. But I can't post right

> now, because it is still on my old e-mail address and I can't send

> from that one anymore. And I can't remember my Yahoo password, would

> have to figure it out or get them to send it to me...

>

> So... I thought I maybe could send my NOK 0.50 worth to you... And

> if you think anybody is interested, you can always post it...

>

> ASK FOR " WHEELCHAIR TICKETS " !

> After the EDNF conference in Philly, 1999, I visited with Tamar

> Freudmann on Manhattan... She taught me something great there. To

> ask for " Wheelchair Tickets " . Just go into a Broadway Theatre and ask

> " Do you have Wheelchair Tickets? " ... These tickets are very cheap...

> After the 2002 conference, I went to NYC for a few days with a

> Norwegian EDS friend. We were out shopping one day, and went into the

> theatre on Broadway where they play Elton 's Aida. We did not

> have much hope of getting tickets to this popular show, but figured

> trying wouldn't hurt. We got tickets the same night. We were so

> happy!!!! These were the most expensive WC tickets I had so far, but

> I think they were $19 each ( " Chicago " was $7, as I remember - these

> tickets are very reasonable!!!) So in the evening, off we went... I

> wasn't all that happy when we were going to our seats, because it was

> down a veeeery steep " hill " or ramp... I was thinking that we'd never

> make it back up, he-he... But it was well worth it, we got down to

> the most fantastic wheelchair seats I have ever seen... It was sort

> of like a balcony, but not very high, on the left side of the stage.

> There were a few seats there, but I think they had a combination of

> removable and not removable seats. Nice place both for wheelchair

> users and friends/family. But not enough with that, I actually think

> they were the nicest places in the whole theatre. The actors looked

> us straight into our eyes... We were a bit higher than them, so we

> had a perfect view... We were so happy... Afterwards I had to stand

> in line with my friend Hildegunn, because of course she had to have

> their authographs on her CD... The actors took their time to talk to

> all their fans, they were so nice. One of the security guards had

> just been in Norway on a vacation, and he made sure that all the

> actors really took their time talking to us, Hildegunn was

> thrilled!!!! I can't really remember how the restrooms where there,

> or if I even used them... But the theatre, even though an old

> building, was accessible. You do need help to get up and down to the

> seats because of that steep " hill " though (you could make it down,

> but you would need quite OK arms, which so many don't have... Also -

> gloves would be a must...). At least they have no stairs!!! And they

> were very helpful... There was a Danish guy there too, in a power

> wheelchair, and he did drive up and down fine, although I don't think

> any wheelchair manufacturer would recommend it... You would have to

> go really carefully...

>

> Oh well... Enough for now... It would be very nice to hear how you

> are doing!!!! And remember to correct your address book. The new one

> is aase.m@... The old address will stop working at all

> soon... I have to get to mailing everybody... Oh yes... Are you

> going to Buffalo??? I am thinking of going... I just have to see my

> EDS family... BTW, maybe you can help me with something... The

> daughter of a woman in the pso. assoc. was just diagnosed with EDS.

> She has a lot of foot issues which she has trouble getting help for.

> Do you have the correct e-mail address for dr Agnew? He said that if

> there was anything, just to mail him. I did mail him but didn't hear

> back, so maybe the address is too old? Do you have his address? I

> would like to mail him to ask if it is OK that I give his address to

> her, so that she and/or her doc's can mail him.

>

> Talk to you later!!!

>

>

>

> hugs,

> Aase Marit

>