Freaky's back from Addenbrooke's and...

[drz]

' Falling awake from the walking sleep'

Coming into realization kind of quote...you know: sleepwalking thru life, the coming awake, maybe by accident?? Perhaps...just the old poet/teacher in me!!! LOL...not really any different than weeping joy and sorrowful laughing...hmmmmm

I think my surviving Wegs, and the whole 9-11 experience for our country, were a couple of those moments for me--sort of a big AHA--this is what is really important in life, not the piddly stuff I was worrying about before.

[freakyschizogirl]

I think surviving Wegs and 9-11 were a couple of those moments for me--sort of a big AHA--this is what is really important in life, not the piddly stuff I was worrying about before.

You survived 9/11 - wow. Very life affirming i should think.

[drz]

No, I was not at WTC or in any direct danger at that time, but my daughter and son-in-law worked at WTC and had planned to be at WTC early that morning along with my oldest grandson. When I heard about the first plane hitting it when I arrived at work it was a very tense moment until I learned they had slept in and were still at home a few blocks away watching the second plane hit the WTC. Another co-worker also had a relative working at the Pentagon so we had some anxious moments till we learned our relatives were physically OK. So in that way 9-11 was a big wake up call for me and many other people too I think. For a few hours I felt the fear of possibly losing what really mattered most in life and its not the stuff in the garage or how much money in the bank that just burned up. I think 9-11 also changed our general sense of security and the whole American psyche and our outlook on life and the world. It was sort of our Pearl Harbor and a world changing event.

You survived 9/11 - wow. Very life affirming i should think.

[pberggren1]

That would be very scary drz. And you are right. Family is most important. Money and material things don't even come close.

[Debbie C]

I was sitting at home watching Good morining America and talking on the phone to my mom when I saw the planes hit the WTC in the background of them talking. I was shocked (as all of America ) .How lucky for your family that your daughter and her family slept in.God was with them that day. Have to gone to the Memorial ? I have never been to the city ..just JFK airport several times. I want to come there over the holidays to see the decorations and shop and try to find the cash cab!
There are so many things I have on my bucket list but I not getting any of them done..I need someone with there own personal plane..anyone on here have one ????

[drz]

For Japan 3-11 was a big AHA moment when the tsunami killed thousands and wiped out some coastal cities. Most countries have had some such disaster experience or other event that seemed to wound their whole nation. Often these can be defined as a day where everyone can remember what they were doing and where they were when they heard the news like Pearl harbor, 9-11, JFK's assassination etc. Maybe we should start another thread on what events made us " fall awake from our walking sleep"?

[Sangye]

I wish I could agree that 9/11 changed our nation's perspective on things, that it made us all appreciate the things which are truly important in life. For a handful of people whose lives continue to be altered by that day, yes. But on a larger scale I think we have become an angrier, more bitter nation and much more self-absorbed, if that is even possible.

[Lightwarrior]

I wish I could agree that 9/11 changed our nation's perspective on things, that it made us all appreciate the things which are truly important in life. For a handful of people whose lives continue to be altered by that day, yes. But on a larger scale I think we have become an angrier, more bitter nation and much more self-absorbed, if that is even possible.

Sangye, it makes me so sad to agree with you

[freakyschizogirl]

Hi all!

Back from Addenbrookes and on a massive high as i saw David Jayne! Wasnt even suppose to see him as he wasnt supposed to be in clinic but for some reason he was and i got him - yay!

Firstly he told me to keep tapering preds by 1mg a month and stop the Omeprazole. Second he tells me i can go ahead with surgery to correct my nose when i see the surgeon later this year. Then he said the reason i get problems with my chest is probably because some people with Wegs get a thinning of their wind pipe and he will either do a CT or Bronchoscopy to look at it and will consult with the chest consultant first.

We then had a little chat and he said he could see from my notes that i had been educating his staff (i have no idea what he means as he didnt elaborate) and i said i like to be well informed, google and am a member on a wegs forum where i get lots of information.
He asked me what the hot topics on the blogsphere (his words) and i told him about a few of the topics i had read recently on here. He then asked me what everyone thought of the name change - i said it was a mixed reaction but i was against it cos it feels like its taking something away from Dr Wegener just because he was associated with the Nazi's. Dr Jayne agreed with me and said he had been to a seminar given my Dr Wegener in 1989 (i think) in Germany and remembers listening to the lecture when Dr Wegener made a joke and all the germans were laughing and Dr Jayne had no idea what was being said. I said i thought that was amazing to have met the finder of the disease.

He said his personal thoughts were that Dr Wegener was reportedly a nice man other than being associated by the Nazi's and agreed with me that changing the name was confusing to both patients and doctors. He said he was keen to get the name vasculitis out there and i showed him my 3 wristbands from Vasculitis Foundation, Vasculitis UK and the Lauren Currie Twilight Foundation. I mentioned i had seen him on a recent clip and he told me he thought it was awful (i presume he means himself in it) and was talking about the other Dr interviewed called Lars something and said it was odd he had an accent on the film as he didnt speak with an accent usually.

Lastly Dr Jayne spoke about surgery on ym nose and said he knows of a doctor from America called Lebowitz who takes bone from the elbow to rebuild the nose and he's recently watched a 40min video of a surgery being performed.

So all in all a very good visit, he doesnt wanna see me again until October when i have my next RTX infusion. Yay!

There is probably more that was said and i will remember later but this is all for now...

[freakyschizogirl]

He also said they see mostly young people with 'localised' wegs and older people tend to have it in multiple places....odd