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Please vent, vent, vent. I may have to one day. Your message reminds me of a saying, "Bad things happen to good people." Why? Sometimes we never know. Good thoughts going out to you. And don't...

So many of you recently have touched on the subject I always have in the back of my mind. As much as Lilly has gone through for so long, as angry she gets at this disease, she looks at my...

Wow! Drz, you have been through so much in such a short period of time. Just shows how diverse this disease is, is different in everyone. Thanks for sharing.

After living for 20+ years with WG through our daughter, it occurred to me just today that for some diagnosed young the disease becomes a part of who they are. Physical struggles with fatigue,...

Lilly had to get a attorney. At first she applied herself, but an individual, at least us, did not have an idea of what to emphasize, how to say things, etc.
At the time she had just had a knee...

My first bone density showed osteopenia in hips and back. After several years on Actenol and then Fosomax, with bone density tests every two years, both hips and back returned to within normal...

Lilly underestimates herself! Her paintings are very primitive, but I love them. I take pictures of her paintings and frame them in 5 X 7s. She doesnt have many, but she needs to begin to do more,...

Everyone has a different story, but each of y'all have some things in common that help each other know you are not alone in your challenges. This is good . . your stories help me as a Mom . . . and...

Thank you all for the advice you gave Lilly. She has been struggling with this, and we as a family try our best to keep her busy! :) I feel like just reading all of your different, yet similar...

Phil, am so sorry to hear you are facing so much! Not just your health but those around you have so many problems of their own that it seems they cannot be a support to you. Know that all of us are...

How did you do at the concert?
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I just put in Search Engine "Wegeners Doctors in Des Moines Iowa and Kansas City, MO" and it took me to lots of Wegeners doctors and medical facilities. Hope this helps if you have not already done...

We had to get a lawyer who specializes in SSD. It's hard to get it yourself, know how to fill out application, and then there is the judge! Our lawyer took his 'pay' out of her first payment, or...

Wow! We hit the jackpot I think! The internet may be your future best friend. I put in the Search engine "Wegeners Disease Doctors in Boston." And I am going to post what I found. Then you can...

I'm wondering how the doctors know if the 'treatment failed' or if he would have had more rapid symptoms without them. Our daughter never went into a complete and real remission I don't think. In...

After living for over 20 years with Wegeners (with our daughter) the only advice I have is pick up the phone and MAKE someone who knows something talk to you, referring to the medication you have a...

Please don't give up Broken Angel. Even those closest to those suffering with Weg do not understand the disease and don't understand those that have it. That is why most Weg patients feel alone and...

I feel bad, you being so scared. It's always more frightening when you don't really know what is going on. My daughter is coming over tonight to use my computer to catch up with everyone. She has...

So sorry to hear about you being in hospital. I'll tell Lilly. She'll want to get in touch. Phil, we're thinking about you!
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This thread is good for me, info on what we experiences with Lilly. All her joints swelled, one after the other, knee would swell big as small grapefruit, red and hot. Then 15 minutes later knee...

Hi Phil. This a.m. Lilly wrote you and it looks like it was on my site or something (we leave much to be desired on learning this site!). Anyway, she is the one who asked questions about dilation...

Hi Phil. I am about to walk out the door to run some errands, but my Mom insisted I read your post. I am glad I did. I am so sorry about your lung issues......But I have never heard of the...

Lilly is out of minutes on her phone, but she wants you'all to know that she is having a chest x-ray tomorrow to see if anything is going on with that. The 22nd her data minutes start over. She is...

When our daughter had a torn meniscus in her knee, surgery was done. Within a short period of time what was done was destroyed. Another surgery was done, the doctor was sure it would work this...

Yes you should get this checked out, and soon. One more Dr. appt. won't make any difference!
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