Alive Day

[Sangye]

Today I was reading an article about how many wounded military veterans celebrate the anniversary of their "Alive Day," which is the day they were wounded. I thought it was such a wonderful way to transform pain and suffering. It lifted my heart and from now on I'm going to celebrate June 26 as my Alive Day. I was quite near death on that, my diagnosis day. Every year I dread June 26 coming around, because it adds to the tally of years that I've been disabled by Wegs, not able to work and living a life that is not what I imagined. It's just been a very painful date, every time. But hey, I might even have a party when it rolls around this year. :biggrin1:

[DEE]

That sounds good Sangye, my alive date is 19th of March.
Maybe i can have a party too.:flapper:

[renidrag]

August 14, 2009

[JeanMarie]

Good idea Sangye! :thumbsup:

[Dirty Don]

It's just been a very painful date, every time. But hey, I might even have a party when it rolls around this year. :biggrin1:

Mine is Aug. 14th, I went back to hospital one year later to 'thank' the people who took care of me. Many were off shift or switched, but I found a couple of nurses who remembered me...made quite an impression on me...and helped deal with some images...even went back to ICU room, just as I 'remembered' it...it was all very cathartic, slightly painful, mostly inspiring to be alive at all...so party time? probably not, but certainly a day to remember even if I really don't remember it at all!! LOL!

[annekat]

I just wasn't as bad off as some of you and was only in the hospital overnight. But that's where a smart internist thought I might have Wegs and got me on the road to dx and treatment. And I could have quickly been in a lot more grave danger otherwise. So I guess I'll have to say March 31st, 2011.

[Pete]

January 12, 2011, for me. I had both a bronchoscopy and a sinus biopsy. I told the two docs doing the procedures that I would buy the one who got the sample that led to a diagnosis that I would buy him a steak dinner. The ENT doc did, and I bought him a nice dinner. I was in hospital for a week, but I was totally ignorant of how sick I was and how serious wegs could be.

On my first night in hospital (I was in for a week.), I got a heparin shot in my belly to prevent DVT. The day nurse told me that if I didn't want another shot, I'd better start walking up and down the hallway at least three times a day. I'm especially grateful to that nurse!!

[mishb]

What a terrific idea Sangye..........and who knows, you may feel a whole lot better on your "Alive Day"

We can all party for you :hug3:


My "Alive Day" would then be August 14, 2010, although, whenever someone asks me how I am feeling, my reply is......today I woke up, and therefore I am alive :biggrin1:

[Sangye]

LOL Sometimes when people ask me how I'm feeling I say "I made it to alive today!" :biggrin1:

[carriej22]

I wish we all lived closer together so we could party together... :)

[annekat]

I wish we all lived closer together so we could party together... :) That would be great! We can sort of do "virtual" partying, I guess.... or maybe we could start an intentional community of Weggies! Where, would be the question.

[pberggren1]

Not even sure what my Alive day is for Wegs. Sometime around April 27 to May 3 of 2003 I think. I was so out of it from the pain meds that I don't remember much those days.

I do know that my Alive day for M. Abscessus is August 18 of 2010. That is the day the susceptibility results came back.

[Dirty Don]

maybe we could start an intentional community of Weggies! Where, would be the question.

Since those on here are computer literate for the most part, how about a virtual community, such as 2nd Life or such. There one can be a member for free, participate in the entire community yet have our own little island or such...to be a part of...it's really kind of neat and scary at the same time if one has never done a virtual community before. Just a thought.

[annekat]

Since those on here are computer literate for the most part, how about a virtual community, such as 2nd Life or such. There one can be a member for free, participate in the entire community yet have our own little island or such...to be a part of...it's really kind of neat and scary at the same time if one has never done a virtual community before. Just a thought. Sounds cool, Don, but not too sure how that is different from what we have..... obviously "virtual communities" are unfamiliar to me and I'll have to google them and 2nd Life. I guess the "islands" part would be something different, for one....

[Dirty Don]

Sounds cool, Don, but not too sure how that is different from what we have..... obviously "virtual communities" are unfamiliar to me and I'll have to google them and 2nd Life. I guess the "islands" part would be something different, for one....

They are simply virtual games, if you will, that allow the user to create and communicate thru an avatar. The communities themselves can be/are managed by other people who 'lease' the server...we 'rent' from them. But one does not have to pay to be 'in world', just if one uses the 'land' and other things...you'll have to see it. Mostly, it's a 'visual' that allows one to 'see' who they are communicating with also. Otherwise, they are just 'blogs' like this in which people can create, interact, and learn...they are interesting at best, but they do allow that visual that 'we' lack here. It's also quite easy to leave messages, create WG ads, and so on...a virtual economy if you will, but you don't have to pay if you don't like, just go in and participate. I doubt if it would go over very well with people on here, but it's easy and fun too. Go to Secondlife.com to get an idea...

[annekat]

They are simply virtual games, if you will, that allow the user to create and communicate thru an avatar. The communities themselves can be/are managed by other people who 'lease' the server...we 'rent' from them. But one does not have to pay to be 'in world', just if one uses the 'land' and other things...you'll have to see it. Mostly, it's a 'visual' that allows one to 'see' who they are communicating with also. Otherwise, they are just 'blogs' like this in which people can create, interact, and learn...they are interesting at best, but they do allow that visual that 'we' lack here. It's also quite easy to leave messages, create WG ads, and so on...a virtual economy if you will, but you don't have to pay if you don't like, just go in and participate. I doubt if it would go over very well with people on here, but it's easy and fun too. Go to Secondlife.com to get an idea... Thanks for the explanation, Don.... I went there briefly and couldn't tell much, but need to investigate further. Or maybe not; I think I spend too much time on the computer already!

[Pete]

"Celebrating" four years of knowing I have GPA/Wegener's today. I'm grateful to all of you who share your experiences and lift each other up. I hope that researchers soon discover what causes our dumb disease so they can find a cure.

Good luck and better health to all! ��

[BrianR]

"Celebrating" four years of knowing I have GPA/Wegener's today. I'm grateful to all of you who share your experiences and lift each other up. I hope that researchers soon discover what causes our dumb disease so they can find a cure.

Good luck and better health to all! ��

Happy Alive Day Pete!

[Alysia]

Happy Alive Day, Pete !

[Alysia]

Not even sure what my Alive day is for Wegs. Sometime around April 27 to May 3 of 2003 I think. I was so out of it from the pain meds that I don't remember much those days.

I do know that my Alive day for M. Abscessus is August 18 of 2010. That is the day the susceptibility results came back.

what can I say ? tears....

[Alysia]

my Alive day was at 2008, at a holiday called Yom Kippur, its a day in which God decides according to the bible, who will live and who will die.
my beautiful Phil passed away this year about only one day (30 hours) before that same Yom Kipur ...

[Alysia]

but it is not nice of me to spoil your day, Pete, I am sorry.

[acker]

What a fantastic idea, I think I'll start two days for myself, one for when I fought off Prostate cancer 9th July 2004, and the other for Aug 12th 2011 after my 5 week stay in hospital for the good old Vasculitis. We had some great people in my ward, unfortunatly quite a few didn't make it, but the staff and care was wonderfull.


Acker:thumbsup:

[Pete]

but it is not nice of me to spoil your day, Pete, I am sorry.

It's going to take a lot more than that to spoil my day.

Be well. Shalom.

[mrtmeo]

I just want to say that I would like to celebrate all of you that are still alive and am honored to know you all.
My mom's alive day's are May 29th, 2013 and May 15th, 2014 where both times she almost died from this disease and due to the drs lack of dx when they knew since 2012 she was anca pos.

[Alysia]

It's going to take a lot more than that to spoil my day.

Be well. Shalom.

Thank you. you are very kind. I considered deleting my posts but you wrote before. I am glad you have a great day.

[annekat]

Happy Alive Day, Pete! You are one of the most inspiring people on here, with your positive attitude, and the proactive way you have handled having Wegs! Will think of you whenever I make a point of getting exercise. Today should be day 4 of walking for me in the past week. And Alysia, I think of you, too, especially, when walking.

[mishb]

Happy Alive Day Pete and Happy Alive Day to everyone else on the forum, whether you are still struggling or have found remission.

Take care

[vdub]

Dang! I saw the post and thought Sangye was back (whoah), then saw the post was 2 yrs old. I think about sangye and know she sometimes lurks around (hi, if you are lurking).

My day would be 21Apr when I had my brain surgery to remove the granulomas. Almost 5 yrs ago now.

[marta]

Happy Alive Day Pete!

[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 :unsure:

What is the deal about August :razz:

[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 :razz:

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.

[greenjeep]

I have been avoiding this post because I think it is a great idea - but to me it is a signal of a mental shift from being negative about all this to having a positive outlook about it. I know which is the better option, I just cannot force my mind to feel good about it all yet. I sure don't want to seem fake and claim all's well when I feel otherwise.
But some day ( when I'm done with my pity party) I'll claim December 22, 2012 as my alive day.
I had achieved remission since my dx in 2010, but went to the er with shortness of breath. Come to find out I was I renal failure and nearly dead. I spent that Christmas and new years in the hospital plus some for good measure. I am still fighting to find a balance if drugs that will maintain my current remission.
A lot to be thankful for? You bet. A lot to worry about? Maybe not, but to date I cannot kick the bad attitude. God bless all if you that can do this - you are better men and women than I.


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

[Jaha]

greenjeap

I think what you are saying makes sense to me. I try to maintain a good attitude, but inside I am so unsure that everything is going to be ok. I still don't feel like I have ever been in remission and sometimes get very resentful for that. It gives me hope when I here of people living more normal lives and travel to wonderful places. I am so thankful and happy to be alive, but I'm just waiting for a break thru of feeling good more days than not.