A new experience

[Dryhill]

Well this afternoon I accomplished two new experiences. Firstly I was in a house full of people with Vasculitis and secondly, I met one of our forum members.

The Surrey branch of Vasculitis UK had a lunch-time get together and PWC51 was there. I know there are lots of us Vasculitis sufferers out there and that we on this forum chat most days, but to actually meet real people helped reinforce I am not the only one suffereing. I strongly recommend that you try and meet up others like ourselves.

Jim

[Sangye]

That is really great, Jim.

[annekat]

Jim, and the rest of you, you will be interested to know that I met none other than Al of our forum, last Monday evening! I was going to start a new thread about it, and I still will.

[Dryhill]

Anne, so did you sit in his rocking chair on the porch? Whenever I see a film/tv programme where there is a house with a porch and a rocking chair, I always think we Brits should publicly castigate our architects for not designing homes with porches.

Jim

[Fran]

........ and was the Live Oak in the yard draped in that Spanish Moss hanging stuff and were the crickets singing in the grass and the cicadas humming away in the trees.....mmmm Wish I had been there - don't you Jim ?

Fran

[Fran]

Anne: It sounds as if you had a lovely evening. I never did think Al was a genuine 'grumpy' - just a front when talking to Jim and Dirty Don.http://www.wegeners-granulomatosis.com/forum/image/gif;base64,R0lGODlhEgAeAKIAAAAAAAAAxmtr73t774Q5c8b O9////wAAACH/C05FVFNDQVBFMi4wAwEAAAAh+QQFyAAAACwAAAAAEgAeAAADXA i63P4wykmrvTjrzef5IPh8QWmaH3Oc7Hksa9u+SizcOF7SwCqA OGCAd/gZjsXD0ZCEGZVJJvPn/H2CV2otx80Ru+DvLze4FbXbcdlsbpytwLYbLHdksZ5QZ5EAACH 5BAUFAAAALAAAAAASAB4AAANcCLrc/jDKSau9OOvN5/kg+HxBaZofc5zseSxr275KHAh4LqBwCeYgX+9gKB4ERGOABjgS n0gDlHlEfoBXJEzH1VG74C+uKhgggapxKMusYX9jB7nbVs2tnl BnkQAAIfkEBQUAAAAsAAAAABIAHgAAA1kIutz+MMpJq704683n +SD4fEFpmh9znOx5LGvbvkocCHguoHAJ5iBf72AoHgREY4AGOB KfSAOUeUR+gFckTMfVUbvgLy70G6vG5Cqzhi1rG9UwJIv1hDqL BAAh+QQFBQAAACwAAAAAEgAeAAADXAi63P4wykmrvTjrzef5IP h8QWmaH3Oc7Hksa9u+ShwIeC6gcAnmIF/vYCgeBERjgAY4Ep9IA5R5RH6AVyRMx9VRu+Av9gdU4UK/AbN2RlfXbCshC9926yp3R5EAACH5BAUFAAAALAAAAAASAB4AAA NjCLrc/jDKSau9OOvN5/kg+HxBaZofc5zseSxr275KHAh4LqBwCeYgX+9gKBgOAqJxRQMg 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Fran

[annekat]

Anne, so did you sit in his rocking chair on the porch? Whenever I see a film/tv programme where there is a house with a porch and a rocking chair, I always think we Brits should publicly castigate our architects for not designing homes with porches.

Jim Actually, Jim, as you may have read by now, it was at the Governor's Mansion here in Olympia, and not at Al's house. However, I agree with you wholeheartedly about porches! And Fran, from the porch I do get to hear the nature sounds; here, it is various birds, frogs, etc., and I'm trying to get a basket of fuschias going to hang there, but the sunlight is a bit challenged on that side of the house. I'd love to have a wrap-around porch that would incorporate the sunnier areas.

[annekat]

Anne: It sounds as if you had a lovely evening. 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Fran Well, your suspicions were confirmed; I believe he is probably only grumpy on paper, or in cyberspace.

[annekat]

Well this afternoon I accomplished two new experiences. Firstly I was in a house full of people with Vasculitis and secondly, I met one of our forum members.

The Surrey branch of Vasculitis UK had a lunch-time get together and PWC51 was there. I know there are lots of us Vasculitis sufferers out there and that we on this forum chat most days, but to actually meet real people helped reinforce I am not the only one suffereing. I strongly recommend that you try and meet up others like ourselves.

Jim Getting back to Jim's original post about meeting forum members or others with Vasculitis:

I met a woman in her 80's who really appears to be in good shape now, but she has had a rough time with Temporal Arteritis, if I got that right, which is another form of Vasculitis. She went permanently blind in one eye, and was on such a high dose of methotrexate that she was like a zombie for awhile. I think she said 60mg./wk! Anyway, now she gets out there and does some really great gardening in her yard; I know how beautiful and well-kept it is because I saw it.

The next Weggie I will probably meet is Kirk of our forum, who lives maybe 15 miles from me and occasionally visits the Olympia Farmers Market where I sell pottery. I already missed him there once.

Jim, I agree, it is very worthwhile to meet other Wegeners and Vasculitis sufferers. Like the forum, it makes us feel less alone with our disorder, and a meeting in person magnifies that effect.

[Dryhill]

Anne, the other thing I found beneficial from Sunday's meeting was chatting to a lady who is attends the same hospital as me but has a different rheumy who she trusts as much as I trust mine - re-assuring to know that if anything happens to my doctor that there is another good one available.

Jim

[Dryhill]

........ and was the Live Oak in the yard draped in that Spanish Moss hanging stuff and were the crickets singing in the grass and the cicadas humming away in the trees.....mmmm Wish I had been there - don't you Jim ?

Fran

Yes Fran. While I love where I live, the south-east of England is overpopultaed and hence has too many major roads and rail links, plus from my bedroom window I can see the landing lights at Gatwick Airport. So though I live in a country village it is never really quiet, as I write this I can hear and see a plane on its final approach and this will go on through the night.

Jim

[Fran]

It's strange what we get used to though Jim - when we first moved from the Midlands to Norfolk 20 years ago, we could not get to sleep because it was too quiet. Although we had moved from a village, there was always some traffic noise and cars passing in the street etc. but in Norfolk - just the occasional hoot of an owl !! Do the planes bother you much or are you so used to it, you don't hear them ?

Fran

[freakyschizogirl]

I've met Eileen (but we didnt speak) and Geoff at Addenbrookes - definitely is nice to meet someone and compare in real life all the day to day stuff with the disease plus we make the ward sister laugh with 2 rare weggies sitting together having a chat! Keeps them on their toes.

I've been at Addenbrookes 2 years now but only started seeing Geoff mostly this year - we seemed to have a few appointments in sync with each other.

I really must get myself down to one of the Cambridge meetings

[Dryhill]

It's strange what we get used to though Jim - when we first moved from the Midlands to Norfolk 20 years ago, we could not get to sleep because it was too quiet. Although we had moved from a village, there was always some traffic noise and cars passing in the street etc. but in Norfolk - just the occasional hoot of an owl !! Do the planes bother you much or are you so used to it, you don't hear them ?

Fran

Officially aircraft are not suposed to fly over the village so generally the noise is muted slightly, but of course sometimes they do fly right over my hoise and then the noise is more noticeable. But just like when you first moved to Norfolk I tend to notice the absence of aircraft (when there is too much snow or really bad fog etc). The late August Bank Holiday can be a bit of a problem if the night is very hot and sticky - I will then have all the windows wide open and because that weekend is near the end of the school holidays they put in more night flights than normal, so it can be a bad night. I cannot complain about the noise as I knew about the planes before I bought my home.

Jim