Jack - Rembered

[Hammy8241]

On 23rd September 2011, we lost an active member of this forum. He'd had WG for some 25 years. During this time, arguably some of the 'so called' cures which he was exposed to, worsened the condition and shortened his life. It is with thanks to people like him that treatment has progressed. The early victims of WG were little more than Guinea Pigs.

Many of you on this forum will not have heard of Jack. His Leonard Cohen icon beamed out for 3 years. I don't think anyone on here ever met him, but on-line, he was very active and shared his knowledge and experience. Search 'Jack' and you will see what I mean. Below are links to a couple of his threads.


Whilst scanning them, it is also sad to see others such as 'lightwarrior' who have gone, to what we hope is a better place. Jack was no better or worse than anyone else but, perhaps, just stands out a little more to me. Also let keep Phil in our minds as he battles on.

I don't post on here very often nowdays (but do lurk) but this guy touched so many lives when alive, I'd just hate for him to be forgotten.
RIP Jack


http://www.wegeners-granulomatosis.com/forum/off-topic-discussion/2269-what-jack-said.html
http://www.wegeners-granulomatosis.com/forum/new-member-introductions/77-20-years-wegener-s.html
(http://www.wegeners-granulomatosis.com/forum/new-member-introductions/77-20-years-wegener-s.html)http://www.wegeners-granulomatosis.com/forum/off-topic-discussion/694-news-jack.html

[Allisonquast]

Great post, thanks for keeping Jack alive in our memories and for reminding us that treatment has improved.

[Wegetarian]

When I joined this forum and read old posts I noticed many by Jack and Lightwarrior, it was really sad to read about their passing :( Feels like I knew them, even though they were gone before I had even heard about them.

I also liked Sangye's posts, even though I guess she hasn't really posted anything in a very long time. (Just not active anymore, I guess).

[Hammy8241]

Like many people, I joined here when I was diagnosed and scared to bits! It was those like Jack and Sangye who help me to understand WG and come to terms with it.

I understand that Sangye is generally Ok by the way, but, as you said, we arrive here scared and dumb - progress to helping others - and then feel the need to brake free as the ones we knew move on or talk via other medias, leaving tha mantle to others....but most of us still lurk :)

Back to Jack and one reason that prompted me to post this was a event I went to on Sunday. Jack worked for a car company in the UK and helped design some good and bad cars. I know he loved the Triumph brand and the photo below was a T4 winning a race. memories :)

Race 1 - hammy8241 (http://hammy8241.smugmug.com/Goodwood-Revival-14092014/Cars-Races-Motorbikes/Race-1-/i-XhnBkH9/A)

[Wegetarian]

I know he loved the Triumph brand and the photo below was a T4 winning a race. memories :)



Really? I had a Triumph when I was younger. A Spitfire MK3. My dad always wanted one when he was young, so he got one when he was older and gave it to when I was old enough. A small world :) I think there were 14 of them registered in my country if I remember correctly.

[marta]

I second everything you've just articulated so beautifully.

Jack was the first to send me a warm welcome to this forum after I posted my intro/battle story. I immediately felt welcome and safe. Jack was an amazing man, and always felt like the wisdom behind everything, the benivalent patriarch. He helped me out of some tight jams in my early days and despite never meeting him in person, I felt like I had him in my corner. I remember talking to him about his avatar one time, and why he chose it, he said because Leonard Cohen was one of his two favorite artists, the other being The Gorillaz. I said, why not have some fun and change your avatar to your other favorite band? See what happens. So he did - https://plus.google.com/u/0/+Gorillaz/videos?pid=5885717708781031938&oid=103244666134214367080 and it lasted no more than a day.... lol.... it makes me laugh, there was an uproar...it was funny. It wasn't much later that he actually put his real photo from before WG as his avatar. Ever since Jack, I can't look at a photo of Leonard Cohen and not get a little butterfly in my stomach feeling like Jack's around.

He gave great advice and he made me laugh and see hope where before there appeared to be little. His passing hit me like a brick.... a ton of bricks.


Those were the days, when I needed this place most in my life - right after diagnosis, there was this incredible mix of energies all working towards keeping our collective as healthy and 'normal' as we can.

Jack was the wisdom, kindness, pespective gained with having to deal with this disease through those early difficult days when it was all experimental and being one that survived their experiments much longer than most.

Sangye was the practical, scientific encyclopedia with a very healthy mix of empathy and compassion. Sangye is pretty active on Twitter where she has over 6600 followers. She's helping all kinds of other souls, animals, birds... she spreads a very beautiful message, widely.

Lightwarrior was exactly that, Christy was a warrior spreading light. She was a nurturer and a healer, perfect for being a nurse in real life. She had a positive view of everything, it was magical to watch. Sadly, we also lost her way too early.

Al came after I had stabalized and was less active here, but we connected and I saw him as the academic of the crew. Finding research and being our go to if you wanted a science journal broken down into English. Al and I had many great discussions on the Autoimmune Disease research/awareness under one umbrella. Al too, lost the WG battle.

Phil rounded off the energy on here, that was my ever present friend, with his welcoming and wealth of personal experience. Phil has suffered greatly at the hands of WG and brings with him a wealth of knowledge and compassion. He has spent most of his young life under the clutches and has chosen to share his experience to help others rather than turning inward. Phil and I have had our little scraps here and there, but that's to be expected of family - especially family where everyone is on pred.

My best wishes go to Phil, and he better not stop his Saskatchewan-scrappy, pool-cue-waving, self from kicking some whoop-ass on this lung issue right now. I know you have it in you Phil. I know that every fairy tale has to have an antagonist, but they all get beaten in the end, so let's get on with the fairy tale part please. Sending Phil my best wishes, brightest light, and healingest ju jus, because this story has only just begun.

Jack, Lightwarrior, and Al, a triad whose passing, so close to each other, shook me to the core. It was too much in too short a time.

One is too much!

But now I feel like I have them closer somehow.


Thanks Hammy for bringing Jack back.

[Hammy8241]

RATBAG Marta... made me cry !

[annekat]

I came here not too long before Jack's passing, but he made a big impression on me. I had the good fortune to meet Al in person not long before he lost the battle. And Lightwarrior was a hard loss to take, as well.

I have exchanged tweets with Sangye just recently, to make sure she knows what is going on with Phil. She is quite heartbroken that he is going through these things. The Tibetan Buddhist temple to which she belongs is including him in their daily prayers. She is doing OK herself, busy with temple activities and political and other causes on Twitter.

[Sangye]

I think of Jack pretty much every day. I don't know what it was about him that I loved so much. I could list some of his qualities but it was more than that. Same with LightWarrior/Christy. Friendship is inexplicable and something to be cherished forever.

Thanks for your kind words everyone. Much love to you all. :hug1:

[Geoff]

Wow I feel as if I have gone back 6 years in a time machine! Posting on the same thread as Sangye and Jack's Avatar evident.
Thanks Paul for remembering the anniversary of Jack's passing, we did discuss it with Dee when we visited her and The Baron earlier this year and I cannot believe how quickly that time has gone. I have to agree with you Marta, just seeing that Avatar brings back a real rush of tingling emotions, as if Jack was going to suddenly open up a new thread.

I, like others, came to this site with trepidation, as searching the internet (Totally against my daughters wishes!) had only frightened the whats its out of me, but it soon became evident that there were friendly helping souls who could relate to my fear and ignorance, and offer me a helping hand.

Like others on this Forum, I still have PMs from Jack tucked away in a folder; he was our Rock, along with Sangye, who despite having suffered, almost as much from the medication as the actual disease, was still able, often with a dry sense of humour, to give advice and encouragement. I owe him so much, and loving the music of Leonard Cohen, Jack is never far away.

[pwc51]

Wow - what can I add to the illustrious contributors in this post / thread. Such good advice has been gleaned from all, both current and, sadly, past it makes me feel humble. Please keep up the good work. It is the energy that comes from this forum that I am sure keeps many of us sane and lifts us through the harder times. Hopefully too it helps the many who do not join but just graze and browse our site!

[renidrag]

Jack and Sangye were the first people that brought me some sense of this disease. I have the anniversary of Jack, Lightwarrior and Al on my calendar so to make sure they will never be forgotten. And Sangye, I think of you quite often and hope all is well. That being said Phil would really like that Triumph, he too is a "car guy". Maybe someone could get him a picture?
Dale

[mishb]

The same from me too

At the moment the tears are rolling for these people :crying:

Jack was the very first person to send me a message to let me know that everything will be alright. This morning I looked at the thread about Phil, which is the first thing I do each morning.
I wish I had of looked at this thread first because seeing the picture of Jack's avatar that Hammy currently is using - scared the #### out of me.
Well maybe scared is not the correct word, but certainly brought up many emotions :crying:

Drz was the next person to send me a message to see how I was doing and then Lightwarrior and Al. (don't you dare go anywhere drz)

Christi and I were friends on facebook and had many a great game of words with friends.
Phil and I are also fb friends and most times (well nearly all of the time) he wins words with friends, against me.

I always look forward to seeing Sangye put up a few posts and I'm glad that you are doing well. I don't do Twitter.

Thankyou Hammy for remembering and helping us remember Jack and the others that have helped us (and still continue to do so) on our juorney.

[Psyborg]

I'm not particularly eloquent, but these folks are all people that are very missed.

[annekat]

Wegener's may be the worst thing that has happened to me, but this forum may be the best, in many ways. Isn't that ironic? It is people like these three who we've lost, and all the others mentioned who are fortunately still with us, and many more, who make it an actual life changing experience, not only to have the medical condition, but to belong to this forum and know you all. Let us not forget the others we've lost, such as our dear Barbara and some who were not here long enough for us to know well. I love you all like family.

[BookNut]

When I first came to this forum, I found myself reading many of Jack's posts. It took me awhile to realize that he had passed on. It really brought me up short to think that such a vital and personable man, so willing to share his hard-won expertise was gone from this world. When I search for Jack - I get his avatar etc - but none of his posts or comments. What am I doing wrong? I would love to "hear" his voice again!

[Jaha]

Hammy,
Thank you for remembering how Jack touched us all. When I first joined, as others have expressed on here, he greeted me with a welcoming intro. Many of my family thought it was a bad idea for me to be on here and read others stories. I would tell them of all the people like Jack, whom could answer all the questions that I had to ask and calm the waters. I really know how I would have dealt with some the issues I had if it weren't members like Jack, he was like fatherly advice with the experience and knowledge of Wegs. I now just also lurk and try to keep up but it is hard. The people we have lost were amazing to the all chatted with them and I miss them too dearly. Thanks to all who have stepped up to help lead others with their journeys. I know that they are all still with us in their own way.:biggrin1:

[annekat]

When I first came to this forum, I found myself reading many of Jack's posts. It took me awhile to realize that he had passed on. It really brought me up short to think that such a vital and personable man, so willing to share his hard-won expertise was gone from this world. When I search for Jack - I get his avatar etc - but none of his posts or comments. What am I doing wrong? I would love to "hear" his voice again! Jacquie, I just gave this a shot and hope I can repeat what I did. I went to his profile page via Community and Member List at top of page. There was nothing on the page, but over in the left sidebar there was a button for Forum Posts, I think it said. That took me to his 20 pages of listed posts, not replies to other people's threads, but on threads that he started, including posts from his daughter at the end. Page 1 was the end and I guess page 20 was the beginning, when he first started posting, though I didn't look that far. These are listed with the thread titles and the first sentence of the post, and then you click to get to the actual thread. I hope I got it right and it works for you. I think you can also access a person's profile and posts just from their avatar on any page.

[BookNut]

Jacquie, I just gave this a shot and hope I can repeat what I did. I went to his profile page via Community and Member List at top of page. There was nothing on the page, but over in the left sidebar there was a button for Forum Posts, I think it said. That took me to his 20 pages of listed posts, not replies to other people's threads, but on threads that he started, including posts from his daughter at the end. Page 1 was the end and I guess page 20 was the beginning, when he first started posting, though I didn't look that far. These are listed with the thread titles and the first sentence of the post, and then you click to get to the actual thread. I hope I got it right and it works for you. I think you can also access a person's profile and posts just from their avatar on any page.

I will give it a try!!! Thanks!!

[annekat]

I will give it a try!!! Thanks!! I think I could have been wrong, and it does show all his posts, whether he started the thread or not. You will find out! And once you click on a post, you will find the entire thread including everyone's posts. I just don't have the energy to go there right now.

[Hammy8241]

I remember the jack posted a photo of himself (or a link) but 've not been able to find it. So if anyone does come across it, please let me know. Thanks

[marta]

I remember what I can't forget - I will never forget Jack Leonard Cohen - I Can't Forget - YouTube (http://www.youtube.com/watch?v=zgJt2M7t2CE)

[Geoff]

With a large dollop of Kismet, synchronicity call it what you will, but todays paper has a whole feature about Leonard Cohen, including a photo of him wearing what could be the same suit and hat! and analysing his upcoming new release, "Popular Problems" (Ha could be about this Forum!)

What caught my eye were a couple of quotes which seemed to fit my image of Jack.

The first one was the correspondents impression of LC, "Gentle humility and poise, his openess and kindness to strangers, and his fantastic eloquence, wisdom and humour"

Later on in the article, LC said, " We all live lives that are tethered to the circumstances in which we find ourselves, so in a certain sense everyone is born in chains. There are moments of liberation (pred free?) and moments of captivity. Life seems to move between these two polarities"

He followed up with, "Yeah the scene is blown up, but you can't keep lamenting the fact. There is another position. You have to stand in that place where there used to be a street and conduct yourself as if there still is a street"

It could be that LC and Jack were united by more than an Avatar; I'd like to think so.

[delorisdoe]

Jack was the first person here to yell at me to get to a proper wg doctor. I imagine him checking in on me periodically. He is probably shaking his fist at me as I am writing this...

[delorisdoe]

Someone mentioned al. Al did not like me. He used to get me so mad. Only phil knew this and he would sometimes try to explain me lol to Al. It never worked but the effort was much appreciated. Funny thing, my picture, avatar or what ever it is was directed towards Al. He was giving me the third degree on my current avatar at the time. It was danareys stor born of the game of thrones. I googled flipping the bird and under images this pic of the bird popped up so I used it. Al's response..."I guess this is directed to me Leigh?" I could not believe he got that. Such a smart man. I think he would have liked me if he'd known me. Maybe.

[me2]

https://www.youtube.com/watch?v=IhwYaEGCpG4

[DEE]

Well another year has nearly passed, Geoff and Hammy visited me and the Baron again. all three of use now in the 60 year old club. Geoff even made it to Whitby Yorkshire told him to raise a cup of coffee to Jack we never did manage to meet up and the café at the bottom of the hill .
23rd September a day to remember but he is always with us !! DEE x

[Hammy8241]

We all cope with death and the dead in our own way.

I always like to spend a moment or two once or twice a week just thinking their names - in the sad believe that they get points for being remembered. I have no idea what happens to those points but am comforted that I have 'done my bit' !
Mind you I think with Alysia on Phils team, he might just be winning ;)

This forum is a lifeline to those who arrive here scared and confused and seeking information into a world of problems. They get advice from those who are or have 'ridden the roller-coaster' of Wegeners.

Jack was a 'sage' in this respect but, he not only gave but learnt a lot about himself in the process. He is and will be missed by those he helped and joked with. Below is a comment from Jacks family after his death -

"Once again thank you for being such great friends to Jack, we know that this site meant a lot to him. He will be/is greatly missed, but he is living on through our memories and will be forever more. His family and friends can't thank you enough for all of the support you all gave him throughout the years, he was glad he was able to help others who were going through similar sort of things."

As individuals we can all do a lot for others and in remembering Jack, I try to thank all the wegis who have moved on to the other side.

[Alysia]

I second everything you've just articulated so beautifully.

Jack was the first to send me a warm welcome to this forum after I posted my intro/battle story. I immediately felt welcome and safe. Jack was an amazing man, and always felt like the wisdom behind everything, the benivalent patriarch. He helped me out of some tight jams in my early days and despite never meeting him in person, I felt like I had him in my corner. I remember talking to him about his avatar one time, and why he chose it, he said because Leonard Cohen was one of his two favorite artists, the other being The Gorillaz. I said, why not have some fun and change your avatar to your other favorite band? See what happens. So he did - https://plus.google.com/u/0/+Gorillaz/videos?pid=5885717708781031938&oid=103244666134214367080 and it lasted no more than a day.... lol.... it makes me laugh, there was an uproar...it was funny. It wasn't much later that he actually put his real photo from before WG as his avatar. Ever since Jack, I can't look at a photo of Leonard Cohen and not get a little butterfly in my stomach feeling like Jack's around.

He gave great advice and he made me laugh and see hope where before there appeared to be little. His passing hit me like a brick.... a ton of bricks.


Those were the days, when I needed this place most in my life - right after diagnosis, there was this incredible mix of energies all working towards keeping our collective as healthy and 'normal' as we can.

Jack was the wisdom, kindness, pespective gained with having to deal with this disease through those early difficult days when it was all experimental and being one that survived their experiments much longer than most.

Sangye was the practical, scientific encyclopedia with a very healthy mix of empathy and compassion. Sangye is pretty active on Twitter where she has over 6600 followers. She's helping all kinds of other souls, animals, birds... she spreads a very beautiful message, widely.

Lightwarrior was exactly that, Christy was a warrior spreading light. She was a nurturer and a healer, perfect for being a nurse in real life. She had a positive view of everything, it was magical to watch. Sadly, we also lost her way too early.

Al came after I had stabalized and was less active here, but we connected and I saw him as the academic of the crew. Finding research and being our go to if you wanted a science journal broken down into English. Al and I had many great discussions on the Autoimmune Disease research/awareness under one umbrella. Al too, lost the WG battle.

Phil rounded off the energy on here, that was my ever present friend, with his welcoming and wealth of personal experience. Phil has suffered greatly at the hands of WG and brings with him a wealth of knowledge and compassion. He has spent most of his young life under the clutches and has chosen to share his experience to help others rather than turning inward. Phil and I have had our little scraps here and there, but that's to be expected of family - especially family where everyone is on pred.

My best wishes go to Phil, and he better not stop his Saskatchewan-scrappy, pool-cue-waving, self from kicking some whoop-ass on this lung issue right now. I know you have it in you Phil. I know that every fairy tale has to have an antagonist, but they all get beaten in the end, so let's get on with the fairy tale part please. Sending Phil my best wishes, brightest light, and healingest ju jus, because this story has only just begun.

Jack, Lightwarrior, and Al, a triad whose passing, so close to each other, shook me to the core. It was too much in too short a time.

One is too much!

But now I feel like I have them closer somehow.


Thanks Hammy for bringing Jack back.

makes me chills to read this one, marta.... you are counting our dead friends... and even though Phil was still alive at that time he is on the list....

[Alysia]

RIP dear Jack. I only got to know you through your posts and other's about you...
I bet you are having great WG Forum up there, with all our best experts, my sweet dr. Phil and dear Barbara ...
Just like you and the others welcomed each one of us when we just came here, you will all be welcoming us when we will join you...
actually my Phil will come to take me in person.
it will be heaven.

[Jaha]

I feel so blessed to have been welcomed to this forum by Jack. I didn't realize how young he was when he passed, he used such wisdom and grace in his words, he was an old soul. He, Al, Lightwarrior, Barbara and Phil are all greatly missed here amongst our special family of Warriors. It is so great to remember and honor all our fallen Warriors, may they all be at peace now.

[mishb]

Another year has gone by and unfortunately we add another to the list.
Our friend Heather aka Squiggled, lost her fight this morning.

Rest in 'pain free' Peace Heather

[Pete]

I guess Andew or Vdub have another candle to place. Sigh....

[BookNut]

I was so sorry to read this on Facebook today.

[annekat]

Heather lived in my community, had been to see me at the Farmers Market, and I had been to her house. Many had gotten to know her through Facebook. This is a big shock to me, for sure. She was a sweet and wonderful person who leaves behind three adult daughters and a younger son, if I have that right, as well as her best friend, who happens to be her ex husband, and at least one dog, maybe two, not sure. She was so excited to get a set of raised garden beds, put in for free by a local organization, for growing veggies this summer. But she has been in and out of the hospital so much with various issues in addition to Wegs.... she just could not seem to catch a break. My heart breaks for all her family and friends. Thank you, Michelle, for adding Heather to the thread... I only wish it didn't have to be so.

[BookNut]

Anne - I am so sorry for your loss. I didn't know Heather very well - but I remember how excited she was to get the raised garden beds. You will miss her, and it is so sad to lose her from this forum as well.

[annekat]

Anne - I am so sorry for your loss. I didn't know Heather very well - but I remember how excited she was to get the raised garden beds. You will miss her, and it is so sad to lose her from this forum as well. Thanks, Jacquie. I did not know her all that well, but at least had met and talked with her in person, and it hurts to know we won't get the chance to develop that friendship. She was a very open and warm person, and such a trooper when it came to dealing with her health issues. Now I know the way to her house, but there's no more reason to go there! Sad. :sad:

[Alysia]

RIP dear Heather... :crying:
Anyone know what happened to her ?

[vdub]

I haven't been on the forum in a long time. I came on today because I had been thinking about Jack and was surprised to see this post as the first in the new post list. Several years ago, Jack said "just because you have one bad disease, doesn't mean you can't get another". He was so right. I have been focused on the diseases I have and not the ones I could get and skin cancer wasn't even on the radar.

I had a biopsy taken a couple weeks ago and the lab test came back today - positive for cancer. Not a real big deal, though, at least I don't think so. It was a real small spot and they think they got it all even though it was a fast-spreading variety. I have a follow-up in a couple weeks to see anything is remaining. I'm not too worried.

And if that isn't bad enough, I had to go off the mtx to prepare for my knee surgery and my rheumy wanted me to stay off to see if I would continue in remission -- nope, didn't work out that way. Started flaring -- extreme fatigue, joint pain, dripping nose, cough, shortness of breath, the whole 9 yards. So, rheumy put me back on mtx a couple weeks ago -- its just now beginning to kick in and I'm feeling a little better.

I'll get a candle on for Squiggled. On edit: The candle is in-place for Heather. Can anyone think of others that I might have overlooked? Thanks, vw

[drz]

I haven't been on the forum in a long time. I came on today because I had been thinking about Jack and was surprised to see this post as the first in the new post list. Several years ago, Jack said "just because you have one bad disease, doesn't mean you can't get another". He was so right. I have been focused on the diseases I have and not the ones I could get and skin cancer wasn't even on the radar.

I had a biopsy taken a couple weeks ago and the lab test came back today - positive for cancer. Not a real big deal, though, at least I don't think so. It was a real small spot and they think they got it all even though it was a fast-spreading variety. I have a follow-up in a couple weeks to see anything is remaining. I'm not too worried.

And if that isn't bad enough, I had to go off the mtx to prepare for my knee surgery and my rheumy wanted me to stay off to see if I would continue in remission -- nope, didn't work out that way. Started flaring -- extreme fatigue, joint pain, dripping nose, cough, shortness of breath, the whole 9 yards. So, rheumy put me back on mtx a couple weeks ago -- its just now beginning to kick in and I'm feeling a little better.

I'll get a candle on for Squiggled.

Sorry to hear the Weg roller coaster took a drop to cause some more stress for you, just what every Weggie needs---NOT!

[annekat]

RIP dear Heather... :crying:
Anyone know what happened to her ? Her daughter on Facebook said they think it was her heart. She had mentioned her heart problems to me. It didn't sound too good. She had other issues, too, besides Wegeners. I think these included lupus, respiratory issues, and I don't remember what else. But she was on a lot of pain killers and on oxygen the last time I saw her. Her Wegs may have been somewhat in remission, but I'm not sure about that. It's hard to say, maybe we will find out more later.

[Alysia]

Some friends on facebook wrote that she had Bechet and not Wg.
I remember the lovely photos of you and her, Anne....
Heart breaking....

[Alysia]

I haven't been on the forum in a long time. I came on today because I had been thinking about Jack and was surprised to see this post as the first in the new post list. Several years ago, Jack said "just because you have one bad disease, doesn't mean you can't get another". He was so right. I have been focused on the diseases I have and not the ones I could get and skin cancer wasn't even on the radar.

I had a biopsy taken a couple weeks ago and the lab test came back today - positive for cancer. Not a real big deal, though, at least I don't think so. It was a real small spot and they think they got it all even though it was a fast-spreading variety. I have a follow-up in a couple weeks to see anything is remaining. I'm not too worried.

And if that isn't bad enough, I had to go off the mtx to prepare for my knee surgery and my rheumy wanted me to stay off to see if I would continue in remission -- nope, didn't work out that way. Started flaring -- extreme fatigue, joint pain, dripping nose, cough, shortness of breath, the whole 9 yards. So, rheumy put me back on mtx a couple weeks ago -- its just now beginning to kick in and I'm feeling a little better.

I'll get a candle on for Squiggled. On edit: The candle is in-place for Heather. Can anyone think of others that I might have overlooked? Thanks, vw

I am sorry vdub. sounds too much at once. But I can also hear your courage and strength and to know that you can handle it. Sending my prayers and lots of love <3

[Sangye]

What terrible news. I don't think I knew Heather, but the loss of any Weggie always hits hard. I hope her suffering was minimal. May her loved ones find peace and comfort.

Vdub, I'm glad the mtx got the Wegs dog back to sleep for. So sorry you had to flare to find out you still need it. Sending you hugs and wishes for strong health.

[annekat]

Some friends on facebook wrote that she had Bechet and not Wg.
I remember the lovely photos of you and her, Anne....
Heart breaking.... I saw that, too, but know from talking to her in person that she had WG. She had more than one thing, and Bechet's could have been in there, too, though I only remember her mentioning lupus and her heart problems in addition to WG. She also had some kind of severe pain in her legs that may not have been WG related.... my memory on that is foggy. I think the WG was a little more controlled currently than some of the other things, but she definitely had it. We talked about the fact that asthma inhalers didn't help her breathing because she had WG and not asthma. She even gave me an inhaler she didn't use, and was planning on giving me another one. (I'm OK on inhalers at present.)

[annekat]

I have been thinking about Heather a lot and here is the link to all of her posts. They are in reverse chronological order, so you need to scroll down to see the first one. Then you need to go to page 1 to see the rest of them. http://www.wegeners-granulomatosis.com/forum/search.php?searchid=771776&pp=&page=2 .

I have seen references on Facebook to the fact that she also had Bechet's. That is not mentioned in these posts, that I saw, but I'm having a hazy memory of her mentioning at some point that it had been added to her list of diagnoses. In fact, it may be the one that killed her, because of the heart issues... though that is only what I'm getting from posts on FB. We know that WG can involve the heart, too, but Bechet's may be a more likely culprit. I just don't know that much about it and will try to find out more.

So, here's the list of things that Heather had, that I know of: WG, lupus, RA, and Bechet's, plus maybe an existing heart condition that was aggravated by those....maybe I'm forgetting something. How unfair that such a wonderful person, or anyone, would be hit with all of those. We will never understand, but it does seem that if one is pre-disposed to autoimmune diseases, they may end up with more than one. We have seen that on here.

Just wanted to share, because Heather eventually became more involved with FB and stopped posting on the forum. The whole time she's been active on FB, she's been in and out of the hospital pretty much non-stop, and when home, has been on oxygen and strong pain killers. May her soul now fly free, with all the pain and suffering a thing of the past.

[annekat]

Thanks vdub, for putting Heather's candle up. And I'm sorry to hear what you have been going through. I'm glad you are upbeat, optimistic, and not worrying about the small spot of cancer that they probably got all of. Glad you are back on track with MTX, too, and it gives me insight as to what would likely happen if I were to go off it myself.

[mishb]

Heathers daughter said that she had Wegeners and Bechets :crying:

[annekat]

Heathers daughter said that she had Wegeners and Bechets :crying: Here is the link to Heather's introductory thread. http://www.wegeners-granulomatosis.com/forum/new-member-introductions/3991-excited-meet-you.html
For some reason the one I posted above has stopped working, if it ever did. At the time she joined the forum, it seemed that the Wegener's dx was bothering her the most. She said her kidneys were operating at 50%, but she was put on MTX, which seems wrong to me. It should have been something stronger like CTX or RTX. She mentions an RA doc, and I don't know if that means a rheumatologist or that she had rheumatoid arthritis. In any case, she already had lupus when dx'ed with WG, and she didn't mention Behcet's, making me think that dx was added later. Her daughter also mentioned that she had fibromyalgia and several people mentioned heart problems that were aggravated by her autoimmune diseases, including Behcet's. I don't know that we will ever know the answers, but it looks to me like she needed better care all along.

[whatthewhat]

Of course, the WG mom community is heartsick whenever there is a death. I have thought it worth mentioning that I did not think her care was adequate :-(

[annekat]

Of course, the WG mom community is heartsick whenever there is a death. I have thought it worth mentioning that I did not think her care was adequate :-( I agree. I think she was on Medicare and/or Medicaid. She should have been able to see the best vasculitis docs at UW rheumatology clinic or other places like Virginia Mason in Seattle. With that many diseases and issues, she absolutely needed the best possible. She didn't want to travel that far but was treated at the Multi-Care clinic in Tacoma, from what she told me. But somewhere near the end she was admitted to a Seattle hospital, possibly more than once. It may have been Swedish medical center, but I'm not sure. One of our Facebook vasculitis friends visited her there. Then she was home for awhile, maybe a couple of weeks or a month before she died. Things kept changing so fast for her that it was hard to keep track.

[Birdie]

Here is the link to Heather's introductory thread. http://www.wegeners-granulomatosis.com/forum/new-member-introductions/3991-excited-meet-you.html

Thanks Anne for the link to her introduction. Without it I didn't know her/would not have known her.

[Alysia]

Of course, the WG mom community is heartsick whenever there is a death. I have thought it worth mentioning that I did not think her care was adequate :-(


:predrage: :predrage: :predrage: :predrage: :crying:
not only mad at the beast but also at those damn arrogant and ignorant docs....