Hello from forum newbie but not a wegeners newbie!

[kmac14]

RGU is a great uni, Rose and Aberdeen is a great city for student life. What is your daughter studying? Could I ask your story? Sorry not sure of the ways of the forum yet.

Hi Michelle, thankyou. yes, it is quite bizarre. Met plenty lupus and loads of renal tx of course, but no Wegeners. Reading some on another thread, yes it is true that the fallout from Wegeners does come back and come back. There are big blocks of time in my life when I pretty much could get on with it without health interfering too much.

[kmac14]

Is it possible to change username once registered?

[Rose]

RGU is a great uni, Rose and Aberdeen is a great city for student life. What is your daughter studying? Could I ask your story? Sorry not sure of the ways of the forum yet.

She is doing MSc Physiotherapy. She is almost finished, got one last placement which she will be doing ion England before returning home to SA for Christmas. Yes, she has really enjoyed her time there and of course going back to her roots.

If you click on my name and choose to go to my profile you will see my posts. I think if you go to my very early posts you will find my story. I got sick in 1989 but went undiagnosed for 17 years. It attacked my GI system but it was not before it spread in 2007 and then attacked my lungs, kidneys etc that I got diagnosed which for me was a good thing as I was not mad!!!! and the treatment gave me relief from my, at times, severe debilitating GI issues.

Rose

[Rose]

Is it possible to change username once registered?

I dont know. I think you should send Andrew a message. He is the boss and runs the forum. I dont think he reads every post so you should just contact him directly.

Click on FORUM then on COMMUNITY..then on MEMBERS LIST and you will find him there under A

Rose

[kmac14]

Thanks Rose, I will do and I will read your story. Great talking to you tonight.

[Rose]

I dont know. I think you should send Andrew a message. He is the boss and runs the forum. I dont think he reads every post so you should just contact him directly.

Click on FORUM then on COMMUNITY..then on MEMBERS LIST and you will find him there under A

Rose

Hi Kim

There is actually a thread for questions etc you may have about the site. You will find it when you click on FORUM. It is in the 'Off Topic' category.

Rose

[Donna-from-Philly]

Welcome to the site. It has been a huge source of info for me. I just recently realized how rare of a disease this is. Your story is amazing. My son is 17 and I can't imagine having him be diagnosed with the disease. I was 42 when I first started having symptoms and 45 when the diagnosis was confirmed.
If I may ask a question? How do you think the disease has changed you because you were diagnosed as a teenager.
FYI....In the states all things Scottish is very popular. A young friend of mine is of German and Italian decent and is planning a Celtic wedding.
Anyway welcome and I'm glad you found us.

[kmac14]

Hi Donna, lovely to hear from you. Yes I think that it has made my life something different from what I would have been. I feel very strongly that I did what I wanted to do and did not let anyone tell me or decide for me whether or not I could have done all the things like college and career, etc. I did it and I would get annoyed when health interfered but largely I kept health at bay. I did not have kids so that would have been different. I think that it is always important to forget what you can't do and push push push on what you can do. In many ways I have been extremely fortunate. I always think of the health thing as a small room in a big house full of rooms. The big house is all of what makes up the sum of who I am. I keep out of the small room unless absolutely necessary. If that makes sense.

[annekat]

Kim, I've already replied to some of your posts, but need to welcome you to the forum! It is the greatest. I don't know how I'd have gotten along without it these last 3.5 years, and you did it for 23! You will be one of our old hands at WG here, as there are few who've had it that long. How nice it must be for this community to open up for you after all those years alone and in the dark! Feeling like you were the only Weggie in the world. As Michelle said, thank goodness for the internet. Congratulations on finding us.

[chris.wg]

Hi Kim. Wow I thought my 2 years without this site was a long time. 23.... Again welcome.