Alive Day

[NikkiNicole]

I was never near death in my diagnosis journey so ... I don't know if I have one?

[annekat]

I was never near death in my diagnosis journey so ... I don't know if I have one?

Me either, but either of us could have been if we had not been dx'ed and treated when we were. So I think we can celebrate the day of our dx and the start of our treatment as Alive Day. However, I agree, there is a special significance to recovering from a true near-death episode and marking the day on the calendar each year.

[renidrag]

Deb and I agreed I was five days from dead. Our room " smelled of death" . My Pulmologist said to us " so this is a rather serendipitous meeting" the rest is history, love that man. August 14, 2009.

[mishb]

Deb and I agreed I was five days from dead. Our room " smelled of death" . My Pulmologist said to us " so this is a rather serendipitous meeting" the rest is history, love that man. August 14, 2009.

Exactly a year before me, Dale - although I started noticing more symptoms (and the sinus infection started) in July 2009

David (Tobey32) was also diagnosed on 14th August, 2010. I'm pretty sure we were the same date

What is the deal about August

[Jaypfei]

I wasn't near death, but according to Pulmonologist I was in pretty bad shape. My date is fast approaching....February 27, 2012. I'd rather wait till May and celebrate ONE year of drug induced remission. ��

[im so blessed]

Today is one for me. I think about it every beginning of the year until today, the 17th. 2007. I woke up from a nap with a pounding headache. Within minutes i was confused,puking,slurred speech. Called 911. After what seemed an hour-it was 30 min i think, the ambulance arrived. This was 4:00 in the afternoon. I remmember nothing else until 2:30 during the nite. They life flighted me. They told my poor husband they did not expect me to live...poor guy i had a brain bleed. Was in ICU for 10 days. Shaved half my head. Put a stent in. Never found a cause. Said it was not wegeners related...i dont no about that. Said theres a better chance it wont happen again then when they do know the cause. 8 years ago now. Seems so strange when i stop and think about it. There is something special about it in a weird way i guess...maybe its the second chance at life. I like to take this day and celebrate life...we weggies expecially all know how short life could be.

[vdub]

This is a special day for me, too, but not the same as you. We started the air war on this day in 1991. Desert Storm.

[drz]

Me either, but either of us could have been if we had not been dx'ed and treated when we were. So I think we can celebrate the day of our dx and the start of our treatment as Alive Day. However, I agree, there is a special significance to recovering from a true near-death episode and marking the day on the calendar each year.

I don't have a specific date but do remember the two times I said farewell ( not the actual dates) since I didn't expect to survive to the next day. I guess my alive day might be the day I was sent to a nursing home for further rehab work after months in the hospital. I figured i might well live at that point at least for awhile even though my prognosis was uncertain and I had no idea as to what degree of recovery I might attain or what life style I might be able to enjoy in the future. I was very lucky and the only resident on my unit of forty alive two years later.

I guess I beleive my admission to my independent living apartment in our assisted living complex on December 3, 2011 would also be a date where I felt i could begin living a new life again .

[Wegetarian]

What is the deal about August

Yeah

Dunno, neither my brain surgery, the weg diagnosis or the relapse have felt that life threatening so not sure I feel that I'm in the Alive-club. Sure, they've all been a bit scary and I really wanted to go somewhere else when I was waiting on the bus stop at 6.30 am on my way to the surgery. Well, maybe the next relapse will be more severe. Then again I kind of celebrated the first year of my dx as statistically the first year seems to be most dangerous.

[whatthewhat]

For my daughter, I would mark March 23, 2013, as she was very near death on the 19th, and I heard the words, "we're calling it for Wegener's" on the 23rd. At that time it became just making sure she had no secondary infections before hitting it hard - I was grateful to have a treatment trajectory. At the time I didn't understand what all was going on in the minds of all who were treating her, and I'm also grateful for that. We saw the head floor nurse in tears once and the head pediatrician also in tears once - when she told us of the spots in the lungs and that they were bringing in oncology - and just seeing those two professionals overcome was startling. Definitely not a week passes that I don't think of children who aren't getting diagnosed and/or treated properly from this wicked disease, and I feel grateful we lived near pediatric rheumatologists who had Wegs experience. For me, gratitude is an important practice to develop. Changes everything.