Hi! Guys

[annekat]

Hi Reetsky my answer to you is farther down the page on a mail to annekat, I don't know how i missed not putting it here. I just don't understand computers.I started a blog because I couldn't find any information so I started my own web, then I found this forum and found most of my information was wrong so I stopped writting.Maybe now that I know a lot more I will continue with my blog. I have had no luck with the Vasculitis Foundation or the auto-immune or the rare disease foundation-. I tried them all last year and they were all very nice and now I am officially registered as having two rare diseases. This year again, I wrote to alll of them and talked on the phone at great length and they never even sent me a pamphlet

Yes, Barbara, continue with your blog. You can correct the things that are wrong. The more blogs, the better! I'm sorry you have had so little help from the organizations you mention.

[Reetsky]

I'm appalled at the lack of real face to face support for WG (GPA) sufferers. Foundations, Societies and Groups exist that print glossy info booklets and pamphlets and make them available on the Internet but try suggesting sit down, face to face chats about the impact this disease is having on you and their eyes glaze over.

It is being proven that talking about traumatic events, getting the fear and anxiety out, aids healing. People who are able to talk about it get better quicker. This Forum is an aid to improvement! You are not alone.

Questions, no matter how banal, nieve or silly you may think they might be actually lead to helpful and informative responses. They might be researching the clinical aspects of this disease but we are learning about the human cost and limitations that it can put on your life.

Can you imagine the uplifting, healing and spiritual atmosphere there would be if everyone on this Forum got together in one room? This is the closest thing to that. Sharing, caring and understanding heals.

[annekat]

I can't imagine life without this forum. I hate to think of the old days before the internet when this wouldn't have been possible.

[Joyce3692]

I am new to this whole illness myself. I didn't have to argue with my Dr. Just am changing to one who specializes in autoimmune illness. Hopefully, he will not add me to the group of "you have a cough, therefore, your systems should be... just like "everyone" else". Well, we all know, with WG, we are Not like everyone else. Good luck on your recovery. I am glad I found this forum. I know already, I will help me to coup with this much better, knowing there are others out there that I can chat with and get advise. Thanks everyone

[Alysia]

Can you imagine the uplifting, healing and spiritual atmosphere there would be if everyone on this Forum got together in one room? This is the closest thing to that. Sharing, caring and understanding heals.

Hi Reetsky and everybody, yes I can imagine that
I wish we could all be together at the same room
although this is what we ARE doing "virtually"
in another post Andrew wrote something about organizing a meeting....
maybe just my imagination, maybe not: Israel is in the "middle" between Europe, Australia, and US/Canada... I wish you were coming here...

[Debbie C]

Hi Reetsky...like everyone else I want to welcome you to the forum and be the first to say I love the picture you have posted !!!! If nothing else that makes my day But I am sorry you had to go thru all that mess to get over your ear infection and the mumps ! It is very important you find a good dr. that is familar with wg and get on the right meds,as you found out your life depends on it. I hope your bloodwork comes back good, I went and had mine done today as well so we shall see. In the meantime keep us posted and good luck.

[Reetsky]

I'm glad you like my Guardian Angel! He's quite dishy, isn't he? Bloods were good but now on another med for high blood pressure and protinuria!! And so it goes on.............

Yesterday is history, tomorrow a mystery. Today is a gift, that's why it's called the Present. What are you going to do with your present today?

[annekat]

Reetsky, I thought maybe that was YOU in the pic, but was afraid to ask!

[Reetsky]

Sorry Anne, yes the photograph in my info area is me but the Angel is a picture I found on the 'net'. Don't be afraid to ask me anything, will always answer where I can.

[Meredith]

I had the same problem - gland started swelling up on face, went to doctor multiple times over a 3 week period because of so much pain. He diagnosed me at first as possble ear problem, then mumps, etc. On high dosage of antibiotics. Finally one weekend went in (they were open on Sat. mornings) and when he saw me he patted me on my leg and just said to "hang in there things would be better in a few days". When I mentioned maybe I needed to go see a Eye, Ear, Nose specialist I could tell it made him mad. Long story but I made the appt. and went to specialist who saved my life - still took 3 months to figure out what was wrong but as soon as he saw me he put me straight in the hospital and started running tests. The last test he did was the one to check for Weg.