heart breaking story, posting for a friend. can we help her ? please ?

[debra]

Birdie,wow,you're story is both encouraging and scary. So u have it in you're mouth too. It's so weird it took the gum as well with a lot of bone! Birdie the weird thing is,after lots of blood in the beginning there was no more blood,or pain! No feeling at all! Teeth just came out,not a drop of blood,nor pain. Dead tissue I guess? Wow I gotta say I never knew this stuff could even happen! I remember someone here having problems with his teeth and he described it as my teeth r disinigrating. And I was reading thinking yes! That's what's happening!II hope hes ok,as i havent seen a post from him. Oh this time I am going to apologize for typos in advance! Ha ha,now I'm ahead of myself! Deb.

[Birdie]

Birdie,wow,you're story is both encouraging and scary.

Didya read my story?
http://www.wegeners-granulomatosis.c...html#post98791

So u have it in you're mouth too.

Prednisone stopped the granuloma in my gums and started healing almost immediately. I still have all my front teeth and a few in the back, tho I got free dental on veterans day by a very good and caring dentist who pulled one tooth. Three offices with more than one dentist in each, and they do free dental for needy vets on veterans day. Anybody in Phx needs to go to Desert Dental and support his good work while getting great dental care.

[debra]

Birdie,I reread and yes I had read you're story,wow! I like the comment about how u had fries too! I remember thinking this man can write! U have an awesome gift with words. You're writing is great. I'm so sorry this all happened and you're wife. Wow you're strong! I admire u,very much and love you're humor... You're an asset to this group! And I had a lot of laughs with u and you're dog! Still do! You're an amazing man... I pray a lot now,and now I pray also for everyone here... God bless us all here! Deb.

[annekat]

Anne thank u! Birdie I went hysterical! Ha ha! So funny! Clever too! U guys r so amazing,it feels like having my hand held,all day even night as the time zones,always someone on here... I can't believe how much I've laughed the last couple days.. Anne,I remember reading you're story and how u didn't know you're nose had collapsed! I watched mine happening,although its not totally collapsed,yet! Did u get that horrible burnt hair smell in you're nose? I wish I knew the parts of the nose to describe better,but I watched and it looked like it was being eaten. Very scary! And lots of pain on outside. Now it has no feeling,like touching my nose I can't feel it... Oh what fun huh? Wee! Deb.

Deb, it touches my heart to know that you remember my story. I don't even know when the saddle nose happened! I wondered if maybe I had it in the hospital and no one said anything! Or I had it in the pulmy's office and that's why he wondered if I was an illicit drug user. I think it happened quickly and I never felt a thing. I can touch my nose and it feels the same as ever, no numbness, just the dented shape. It looks just like it does in my avatar, much worse from the side, and my glasses cover it up pretty well. All noses are different, I guess.

[debra]

Anne of course I rember you're story! Back in 2012 I rember seeing u all the time! I remember u and al meeting. So weird Hu? Knowing someone knows u and u don't know them! Weird how u had no pain in you're nose,and I had so much. Very strange disease to have! Wish I had hit the lottery instead! Ha ha! I do have to say though that this all helped me to find God. He found me! Finding this group then coming out of hiding,thank u Phil and Alysia and now all u! Such big blessings! I am so grateful and touched... I was even made calm today by u all,as I got scared with this pain. It's actually somewhat better now.The laughing helped it. Now its weird itching but not as painful... Thank u all so much for everything! By the way,how is Marta and her husband? So many here I wonder about..... Deb.

[annekat]

I think Marta and her family are doing fine. She does check in here once in awhile. She's full of energy and always full of new ideas for promoting awareness of WG and other autoimmune diseases. Still skiing like a champ, too! I also see her on Facebook but probably about as often as we see her here.

[annekat]

Meeting Al was a sweet experience. I'm still in touch with his good friend, a pianist, who is involved with putting on the Governor's Mansion concerts here in Olympia, WA, the state capital. Al used to drive down from the San Juan Islands, in the far north of the state, which involved an expensive ferry ride and several hours of driving, to record those concerts, and was held in high esteem for his professional ability in doing so.

[debra]

Anne,so cool! Thank u! I remember her energy! Oh just remembered her husbands name,brien. Is Hanna,the little girl ok? I remember her dad posting. Sanjye, jola57 ya I think of them all. Jacks posts where some of the first I read. He was so awesome! Never new him as he had already passed,but felt that way.... Deb.

[debra]

Lets all run away and hide in bora bora! My picture,avatar! The weg dog won't find us! We will hide in grass huts! Ha ha! U keep a knocking but ya can't come in! We can all chant this from our grass huts! To the weg dog!!!!!! Ha ha! Deb.

[annekat]

Anne,so cool! Thank u! I remember her energy! Oh just remembered her husbands name,brien. Is Hanna,the little girl ok? I remember her dad posting. Sanjye, jola57 ya I think of them all. Jacks posts where some of the first I read. He was so awesome! Never new him as he had already passed,but felt that way.... Deb.

I think Brian and Hana are fine. Jola's on FB more than here, but still around and looking good, going on hikes with her hubby. Sangye only checks in briefly anymore but I think is doing fine with her other activities. I tweet with her once in a great while, and let her know if someone is in a crisis, as when Phil was in the hospital in Calgary, and finally left us, and all about Alysia's being there with him and for him.....