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Jack
04-01-2010, 07:53 AM
I've been holding off from starting this thread because I was unsure of how comfortable members would be about discussing the subject. However, it would seem from the initial reaction that it is a topic many would like to contribute to or at least read and consider. It is inevitably going to include religious beliefs so if it is OK by Andrew, I'd like to wave the ban for this thread. It would be nice to think that we could consider another point of view without starting a flame war! ;)

Wegener's is a life threatening condition, we all know that. We have also probably considered the fact that if it has not killed us yet (true for most! ;) ) then it may well shorten our life expectancy and quality of life. These things mean that coming to terms with death is something many of us have done, are working on or just trying to avoid thinking about. One way or another, the subject is more real to us than most even though it is a natural part of the life cycle that everyone must face at some time.

My own experience of death has been through that of family and friends. I've seen my parent die very quickly and painlessly in old age, mother-in-law very slowly and in terrible condition and friends through brain hemorrhage and suicide. A real mixture that helps gain an understanding of how transient life is and the many ways it can end. I feel grateful to still be here after surviving Wegener's, but wonder what is in store for the future. I'm not getting any better and that's for sure!

The moment of dying is not something I fear. I have come to terms with its inevitability and have no idea what it will bring. I have no religious beliefs to tell me the answers, but I'm sure that it will either be a great adventure or nothingness, so that would be OK too. The process of dying is something different and I fear a long drawn out deterioration similar to that my mother-in-law had to endure. I've made this known to everyone close to me so that if a decision has to be made on my behalf, they can let me go in peace and with a clear conscience. Withdrawing treatment, feeding and water is fine by me if there is no future that I would consider worthwhile.

The problem with all the plans is that they exist in a future that I can not control. I expect that in the end, I will have to play with the cards that fate deals me as best I can. One thing for sure, I'll end up dead some day.




And so will you. ;)


(Hope that went OK. I was not too sure what direction it was going in, but now the thread is live it will take on a direction of its own.)

JudyJ
04-01-2010, 09:17 AM
Wow, deep subject but one we all need to face.In all the reading I have done of your writing Jack you seem like a wise man. I hope you do get better. I know the day will come when this humpty dumpty won't be able to be put back together again so here are my thoughts. I am a Christain and have been most of my life. I won't go into my religous beliefs but most of you probably know where I stand. I have come to terms with my mortality. I have tried to tell my adult children that I am a peace with life and death. I have had and am still having a good life despite this illnness. I have never felt that I have wanted to repeat any part of my life but have most of the time enjoyed looked fore ward to the next step in life.
My children won't even consider talking about such things. It really upsets them.
The hardest part is thinking about how my family and how they will cope when I am gone. They depend on me and I on them alot. Physically and emotionally. They are my best friends.
My brother had aids and died 15 years ago, about 2 weeks after I got out of the hospitol the first time I got sick. We talked to each other on the phone daily for our different hospitols. It was the worse and the best times we have ever had. He had a humorous outlook on death. He would upset me so bad when he would come for visits he would lay on the sofa with a lilly in hand and make references to his death. Now that I look back I cherish those things that used to upset me so. It was his way. I guess we all have to cope the way our beliefs and personality allows.
My goal is to enjoy my husband, family and friends as best I can and to leave memories to them all that are good and fun. I would like to think that I am leaving tools for their lives. I had so many people that are gone now that helped shape me into the person that I am and I think of them often with love. I want to leave that.
Thanks Jack I really felt good to share all that even if no one gets any thing out of it. I did!!!!!

elephant
04-01-2010, 09:32 AM
I don't want to die, but I know it is going to happen some day. So when the bright light comes to pick me up I will be ready. I am hoping I can stay alive till my children are grown. I have noticed with all the medicines that I am on....I am a complete space cadet! Thanks Jack for starting this thread. Not really wordy lately.

Lightwarrior
04-01-2010, 11:04 AM
Life is a gift. I think in ways having Wegs is a gift, it forces us to consider our own mortality, we know that our lives may be shorter so we have the opportunity to cherish and find closure and meaning in things that we often take for granted. If I never got Wegs but died on the way home from work in a car accident, there are so many opportunties to reconnect and reprioritize that I would have missed.

I consider myself spiritual but not neccessarily religious. I am not afraid of death, although I love life. I think the energy we create (positive or negative) is what we take with us and perhaps bring back. As an ICU nurse I have seen many deaths and I have never had one person wish for time at the office (lesson to self) they all wish for more time with loved ones. I don't know if any of the other nurses on this forum have noticed but I have frequently experienced the dying person talking to someone by name, smiling, without exception family has always said that the person or people they were talking to were dead loved ones (never live missing ones)......interesting.

The families with the least trauma are those who have a clear understanding of what the dying persons wishes were. It is such a tragedy when death has never been talked about and 1/2 the family says that keeping Grandma on a vent is torture and she would never want to die that way, while the other 1/2 calls the ones who are in favor of allowing a natural death murderers. (Yes those words have actually been used) and it creates such strife and hurt within families. I have completed something called Five Wishes Aging With Dignity Five Wishes (http://www.agingwithdignity.org/five-wishes.php) It goes into great detail about end of life issues in a loving way.

I hope to have leave the world a bit better place for my having been here. I do worry about my children and grandchildren financially because I am sole support of my grandchildren, but I have to leave things as legally locked up as possible and then let go and understand that I raised smart children who even though they don't have my income capacity they will figure it out, even now they are trying to figure out alternatives if I lost my job, my insurance my benefits and it is allowing them to grow in ways I didn't anticipate. I might feel, I'm sure I would feel differently if they were all small. Okay, there I go with my totally innacuarte percption that I can control things.

Ultimately life and death are all part of this amazing circle and each season has its strengths and lessons. I hope to live and die each one well.

JanW
04-01-2010, 12:31 PM
I do not want to die. I am afraid of suffering and pain with death and I do have young children I would like to see live to adulthood. I want to have grandchildren. I want to outlive my mother and my grandmother.

I think that WG reminds me that we are all broken. Even when you are whole you could be, potentially, at any time, broken, physically, mentally, spiritually. I think that it's good to be able to look into that abyss and and say, "I'm still here." It has been my horrendous misfortune, and great gift, to have this disease. Easy for me to say, and feel, because most of the time I feel pretty good except for my ankle. I think of all of the others who are broken out there that I don't even know about, like many don't know about me, and I try to be kinder, more patient, more empathetic. I wonder about the pain they are hiding.

I have had a good life so far; I have no regrets. I have never once thought "why me?" with this disease. Why the hell not?

Needing the doctors I do need, I am grateful that I have the insurance that I need and I live right outside of what I consider to be one of the greatest cities in the world. I remember right after 9-11, we all had signs that said I <heart> New York more than ever, and that's still how I feel. We were all so, so, close to death then...so much closer than I feel now.

There have been times in my life when life went from one thing in an instant to another: "Your father' is dead" "I do" "It's a girl" "It's a boy" "The blood test is back and shows that you are positive for Wegeners" "You will need surgery to fix your windpipe -- you do not have even two months to wait." Everything goes quiet and all you can hear is the blood rushing through your veins. And even in that moment you know the news is not all bad or its not all good. It's just the first step into a new world. I hope that death is like that too.

jola57
04-01-2010, 04:51 PM
Jack, you took the words from my mouth so I will not repeat them. My experience with death and feelings about it are so much like yours. I do not fear it, after all I am living on borrowed time. Before cyclophospamide prognosis was 3 to 8 months if lucky. So every day is a gift. I have no problem getting old and cranky :), but definitely do not want to become a burden to my kids where I can't take care of myself. I have already told them that I welcome going to an old folks home, I will enjoy the company and activities and would much rather prefer being with people my age and having peace and quiet than being a pain in the donkey. I am too young to think about dying but if it comes quicker rather than later I am ready. I would like however to see my kids settle and would like to be able to play with grandkids. If that is written for me I will be even hapier if that is possible. I love my life, would not do anything different and enjoy everyday. My husband is very outdorsy active, hiking, backcountry skiing, mountaneering, paragliding, kayaking, rock climbing, scuba diving. He will enjoy his life style for as long as he can, while I can't do these activities anymore (no regrets there except for skiing and scuba diving) I live the aventures thru him and so I am happy here too.
Wegs has given me a precious gift - I don't sweat the small stuff anymore, I don't get angry or disapointed and take events for what they are. I am a happy person and will die happy.

Jack
04-01-2010, 05:25 PM
Wow! This thread is prompting some really good writing and it all seems so positive. I think that considering death must just bring home how much life means to us rather than raising too many fears.

pberggren1
04-01-2010, 10:52 PM
All suffering or illness is a great grace or gift from God whether we realize it or not.

For myself I found it a little hard to realize that WG was a gift from The Lord Himself. I almost was on deaths door before being diagnosed with WG. I had fully accepted death and was prepared to die. I had seen a Priest during the day and He heard my Confession and in the evening I told my parents where my 2 life insurance policies were and other such matters to be taken care of once I passed away. But at the time I did not see suffering or illness as a gift from God while I was in the hospital starting treatment of Wegs. It took me a few weeks to come to terms with my new normal and soon realized this was a wake up call from God and a great grace as well.

Getting back to Death:

We know that 3 things are certain about death:

1. Death is a punishment for sin. God said to Adam and Eve: "Of tree of knowledge of good and evil, thou shalt not eat. But in what day soever thou shalt eat of it, thou shalt die the death." (Genisis 2:17). After their sin, He solemnly pronounced the sentence: "In the sweat of thy face shalt thou eat bread till thou return to the earth, out of which thou wast taken; for dust thour art, and into dust thou shalt return." (Gen. 3:19). "Wherefore as by one man sin entered into this world, and by sin death; and so death passed upon all men, in whom all have sinned." (Rom. 5:12). "For the wages of sin is death." (Rom. 6:23).

2. Death is the moment on which our enternity depends: For after death there is no more time for repentance or merit. "I must work the works of him that sent me, whilst it is day: the night cometh, when no man can work." (John 9:4)

3.The time and circumstances of death is uncertain: "Be you then also ready: for at what hour you think not, the Son of man will come." (Luke 12:40)

I could go on and on and write hundreds of pages about death. This would take me the better part of a few months I suspect and would have to post it in sections as there is a 5000 word or character limit on posts.

Let us on the other hand rejoice in our suffering and be glad God has given us another chance and be thankful for it.

And let us be thankful for one another and for Andrew who keeps this site going.

I will again say that all of you on here have greatly improved my life. I learn something from all of you on this site every time I log on. You are all truely a gift from God to me.

This is Divine Providence.

Jack
04-01-2010, 11:16 PM
Some strongly held views expressed there. I hope that if other members disagree they will just let it pass. :)

Sangye
04-02-2010, 01:56 AM
I think this thread is great. I don't mind hearing other people's views that are different from mine, because we're not trying to convince each other of anything, just expressing where we are on this topic.

I'm comfortable with death. In Buddhism the contemplation of death and impermanence is constant. To us, it's part of cyclic existence-- if there is birth, there is death. The time of death is considered to be a very potent time for a Buddhist practitioner. It's too long to explain why or what liberation is, but one can attain liberation at the time of death more easily than at any other time. So we actually look forward to the time of death, hoping we have practiced well enough to accomplish the Path.

That doesn't mean we want to hasten death, though! We want very long lives to be able to purify our minds and to benefit others. I've had a number of times with Wegs that I've been on the brink of death. My only thought has been that I don't want to die because I have so much work to do on my mind. To Buddhists, the mindstream is the only thing that continues throughout all lives. Also, the longer we live, the more we can purify our negative karma and create positive karma for future lives.

Wegs is a huge blessing because it's a constant reminder of impermanence. A symptom appears out of nowhere and disappears into nowhere. It's flaring, it's not flaring. I'm on a drug, I'm off a drug. Contemplating impermanence is considered the "king of meditations." Again, too long to explain why, but suffice it to say that the fact that Wegs keeps me in a constant state of flux makes it a perfect opportunity for practice. Of course, I don't celebrate that all the time. I'm sick of being sick. I often feel angry, despairing and afraid. But the part of me that stands back and observes thinks this is a pretty sweet deal.

I'm reminded of something His Holiness the Dalai Lama said once in an interfaith conference. Someone asked him to compare the lives of Buddhist monks to Christian monks (eg Franciscan). He said "I think Christian monks work much harder because you only have one life. We Buddhists can afford to be a little lazy." I thought it was a wonderful, respectful comment. The Christian leaders did, too.

pberggren1
04-02-2010, 02:02 AM
I certainly don't want you to die Sangye. You have benefitted so many on this site.

Sangye
04-02-2010, 02:35 AM
Lightwarrior, thanks for listing the 5 Wishes info. I had thought to do that as well! It's a great thing to do.

coffeelover
04-02-2010, 03:24 AM
Wegs has given me a precious gift - I don't sweat the small stuff anymore, I don't get angry or disapointed and take events for what they are. I am a happy person and will die happy. quoted by Jola57.
This is my attitude exactly. I have recently been talking about this very subject with people (my eye doctor, nurses, my surgeon etc). I have a faith that sustains me and I believe that this is why I am not afraid of the inevitable. Although, like most of you, I love life and intend to live it to the fullest. The little things that I find different with me sick that it was with me not sick is my attitude. I no longer worry about the opinions etc of others, I do what I feel is the best for whoever I am involved with (family, friends whatever) and each night when I go to bed, I know that I have done my best for the day. Maybe its the prednisone, but I am very happy right now and this is not something I experienced when I was "not sick'. So I believe in Jolas comments and I too will die happy, when they day comes. (and with a cup of jo in my hand)
coffeelover

JudyJ
04-02-2010, 05:11 AM
I think this thread has helped me respect others beliefs more. I identify more with Pberggren1 and agree that this site is a gift from God. I am glad to see so many have a peace. I agree that having this illness makes me appreciate life so much more. I have alot more compassion for others as well.

Lightwarrior
04-02-2010, 10:30 AM
Some strongly held views expressed there. I hope that if other members disagree they will just let it pass. :)

I think this is a safe place and it is understood each persons views are opinions. Everyone gets a pass on this one. Thanks for starting this Jack.

elephant
04-02-2010, 12:07 PM
Ditto to all the above. This is a wonderful group! Love everyone here!

Col 23
04-03-2010, 01:55 AM
I read the thread with heavy heart
But hey Im not ready for the cart

Our life experiences and enviroments have influenced our beliefs and we are who we are. Although we might agree or disagree with everyone its the diversity of this group and its globalness that make it unique and helpful.
Col 23

elephant
04-03-2010, 04:37 AM
I like that Col, well said. :)

jola57
04-03-2010, 04:47 AM
I am glad for all of you. Illness, like nothing else in the worls, unites all peoples regardless of from where they are. It is one thing that is common to all faiths, creeds and nations. Dying opens up the most basic of our emotions - survival. I am glad we are here to share and be there for each other. Being so far away from each other gives us the freedom of expression like we would not have otherwise. I embrace all religions and mankind. Live and let live in peace. Of all religions that I know, Buddhism is the only one that has never been a part of violence agains others.

ian anderson
05-21-2010, 08:14 AM
have just read your post on death well i must say ive heard a few things in my life but wg being a gift of grace from god takes the biscuit its well worth saying that your knowledge of god is limited as is your lack of it on the bible the god of the bible does not smite people with illness or death or any other means especially wg( JAMES 1v13) god is love not to be associated with suffering which according to your religion goes hand in hand instead of confessing to a priest why dont you confess to him who we all have an accounting with almighty jehovah himself through not a man but his son christ perhaps then he GOD will grant you is holy spirit and then after having your eyes opened you will see for yourself that god does not inflict diseases on people but rather we become diseased through imperfection due to the inherited sin of a man adam

ian anderson
05-21-2010, 08:18 AM
theres another group that i can think of who by the way they live their lives commit no violence against their fellowman even refusing to take up arms in conflict and thats jehovahs witnesses

Sangye
05-21-2010, 09:54 AM
Ian, we normally don't discuss religion in this group so as not to offend anyone. For this thread we all made an exception, and many of us expressed our religious beliefs in regards to death. We were careful not to criticize each other or enter into arguments, etc.... Your comment above this last one is not in keeping with that tone. Even though your comments were not directed at me, it hurts me to see another member of our wonderful group receive criticism. I have great respect for your beliefs and would ask that you please avoid speaking badly of others' beliefs. Thank you--

Lightwarrior
05-21-2010, 11:58 AM
have just read your post on death well i must say ive heard a few things in my life but wg being a gift of grace from god takes the biscuit its well worth saying that your knowledge of god is limited as is your lack of it on the bible the god of the bible does not smite people with illness or death or any other means especially wg( JAMES 1v13) god is love not to be associated with suffering which according to your religion goes hand in hand instead of confessing to a priest why dont you confess to him who we all have an accounting with almighty jehovah himself through not a man but his son christ perhaps then he GOD will grant you is holy spirit and then after having your eyes opened you will see for yourself that god does not inflict diseases on people but rather we become diseased through imperfection due to the inherited sin of a man adam

Ian,
I'm sure that you did not intend to make this thread feel unsafe to post in. Since religion is not normally allowed we all agreed that this thread would be a safe place to discuss our feellngs on death, your comments might make it hard for someone to express their opinion here. Would you mind sharing with us how you feel, personally about death, your own mortality?? It is okay for you to share that you hold a belief in a life after death, or that it scares you, whatever you are feeling. It is not okay to pass judgement or or belittle the beliefs that others have expressed. I hope that you will restore the safety that I'm sure you didn't mean to jeopordize.
Namaste,
Lightwarrior

jola57
05-21-2010, 03:21 PM
Hi Ian, religion and politics are two very volatile subjects that we just do not discuss on this forum. I am sorry that unbeknown to you about the purpose of this post, you wrote your belief and became critical of one of our own. I am sorry too that we all jumped up at you for voicing your opinion. It is nothing personal at all, we just simply want to make sure that we ALL feel comfortable with discussing and telling of our most intimate feelings and problems to each other with the expectation of understanding and friendship..

ian anderson
05-21-2010, 05:10 PM
yes the truth hurts a wee bit more than wg but ive got the message

Lightwarrior
05-22-2010, 01:11 AM
yes the truth hurts a wee bit more than wg but ive got the message

I have to say most of your posts make me smile...

Sangye
05-22-2010, 04:37 AM
LOL-- Ian, that was pretty funny. Happy to have you in the group. :)

ian anderson
05-22-2010, 07:40 AM
i wasnt speaking badly of others beliefs and if that is what you thought your mistaken the fact that you commented means that you yourself may hold strongly held beliefs that may concur with those comments but due to your good self control you refrained from expressing them i salute you i on the other hand find it hurts a bit more when not only have i to contend with the most dasterdly of illnesses but i have to contemplate that god himself has decided to give me this illness if that is the case then we as a suffering people have to realise that (1) god doesnt care about our suffering (2) he doesnt listen to our prayers for help (3) and we have no hope of our suffering to end. that being the case there are many people around the earth who are wasting their time praying, hoping, believing, that one day all this is going to end how sad dont be angry at my frustration at others comments when i have devoted my whole mind, heart, soul, to a god i hope will one day soon end ALL our suffering with kind regards your fellow weggie ian

Sangye
05-22-2010, 07:51 AM
Ian, I'm not sure who you were directing this to, since several of us commented.

ian anderson
05-22-2010, 07:59 AM
here are my thoughts on death i dont want to die and neither does anyone even if we are suffering with a terrible illness like wg none of us can say this is when i want to die that being the case here is MY dilemma i neither judge nor belittle others i am your most humble servant my fellow weggie i only ask that we reason on this we can forget praying to god for relief after all twas him who smote us we can forget praying for others twas him that smote them we can forget a cure he holds the knowledge we can all be sure of more suffering he doesnt care why are we even talking to each other its not going to go away he enjoys our pain right WRONG we speak to each to offer our strength to those who are weak to encourage each other to keep going we pray for those who are going through that which you and i have learned to live with that those with knowledge will bring an end to our suffering through a break in medicine do not be angry my friend when i read the comments first time i thought to myself where is the encouragement in saying that the one in whom we trust implicitly gave us this disease think of a burst balloon trying to soar into the sky yes impossible and i my friend believe in the possible kind regards ian anderson

ian anderson
05-22-2010, 08:03 AM
i hope i can continue to make you smile with my posts take care kind regards ian anderson

ian anderson
05-22-2010, 08:04 AM
and im happy to be in the group sorry if my comments offended kind regards ian anderson

ian anderson
05-22-2010, 08:06 AM
anyone who will listen kind regards ian

andrew
05-22-2010, 08:28 AM
Hi peeps :-)
Before this thread goes south, I direct everyone's attention to: http://www.wegeners-granulomatosis.com/forum/forum-rules-please-read-before-posting/203-rules-posting-site.html

Andrew: exit stage left...... ;-)

onatreetop
05-22-2010, 03:03 PM
After being dxs with Wg everything looked different to me. My famliy and friends.Even a simple things like the sun. everything almost for the first time completely. I am not ready to die yet. I want to see my children as adults and have families of there own. To be there for them in anyway I can to help them unlike my family for me. Ihavent acted sick nor want too. I am for the most part possitive. Even while sitting in the waiting room for three hours while other people complain and get angry. I have always beena fairly calm sprited person with a more open mind andeye than most. Where Im going with this is no I dontwant it to be soonI am to wooried about how my children would grow into adults without me to show them love. I do love my husband but he isnt superdad. He was brought up not allowed to have or should I say show feelings. So dealing with the kids in many ways is very hard for him. Theother thought that came to mind was money and debt. If anything where to happen to me my family wont make it. So I dicided to cut up all the credit cards and consolidate mypersonal debt. it will be paid off in 5 years now instead of 20 like the card companies like to do. Then I know at least my husband wont be cursing me if I did pass onany time soon. Other than that I dont want to be kept alive as a veggie. Let me go!! If I cant have a real quality of life then I dont want to be a burden either. The other life altering event was losing my closet friend who was 50. it has been a year now Easter Sunday. That was before being dxd with Wg. The way you look at everything changes after someone close, really close pass. Anyway, That felt good bad or indifferent. I am a strong soul or so I have been told. I have much to do yet! And I will do it on meds if I have too!!!!

DEE
05-22-2010, 04:06 PM
Onatreetop good for you
just the way that i feel ive had a pretty rough trot lately and a saying we have is KEEP TAKING THE TABLETS thats because before wg i never did take any
but like you if thats what it takes so be it
today is the anniversary of my dads like him like him death he fought to keep going but in the end he said it was to hard and he was too tired i did not understand at the the time but now i do
so like him im going to fight this not giving in and as you say still things that i want to do maybe at a slower pace at the moment !
i dont take anything for granted and like you see things through different eyes
the thought of dying does not worry me like you i would be more worried about the people i leave behind
They all know that i love them more than anything in the world .
maybe today was the day these thoughts needed to come out off my head ! time to move on today is another day:) DEEx

Doug
05-26-2010, 11:45 PM
332 I managed not to come across this thread until today. Good grief! [CENSORED- extensive commentary] And that's how I feel. Incidentally, that's also why I am comfortable with death. I cite this: [CENSORED- reference to religious text]. Buckets of blood. Collectively, any group is capable of [CENSORED- ugliness to an unimaginable degree, with many fingers pointed, and many unlikely groups documented]. Remember, "pacifist" ends in "f-i-s-t".

When I read Jack's original thread outline, I thought, "Here's one I won't touch with the proverbial 10-foot pole." My concerns proved out. Private messaging works best for the banned topics, even when they relate to another topic all can discuss like ladies and gentlemen.


[Ian- You just have to be careful when you "go commando"! I post the following provocative image as a measure of support and family- I'm mostly Scottish, or "largely Scottish", post-Prednisone! Been in your predicament, and learned a lesson in intolerance! Or tolerance. Or intolerance posing as tolerance. ]

331
333 I guarantee Louie wasn't proposing to treat with his nemesis J. Doe (the black-n-white cat). Moments later, he chased J. Doe under the tree.

pberggren1
05-27-2010, 05:08 AM
I am also Scottish. My Great Grandfather came directly from Scottland.

Doug
05-27-2010, 05:30 AM
334
I am also Scottish. My Great Grandfather came directly from Scottland.

I'll "flag" you, too, then, Phil! Not only did both my maternal grandparents come directly from Scotland (East Kilbride and Glasgow), they came through Nova Scotia. Curiously, though they worked in the same office building in Glasgow, they didn't met, fall in love, marry, until they attended a Scottish picnic at Washington Park in Denver, Colorado, USA. Both followed family that settled in the USA to Colorado. Most of the ancesters on my father's side were Scottish, Welsh, Irish, and a few other hotheaded, opinionated peoples, so it is inevitable that I've spent a life speaking up and being shot down. Ha!

What does this have to do with death or my world view? Well, it is the origin of my [CENSORED reference of a religious affiliation] and the fact that I [CENSORED veiled referenced to tribal practices documented by none less than Julius Caesar in his commentaries on conquering what became England]. As a [CENSORED religious affliation], it goes without saying that death, to me, is [CENSORED theological twist on commentator's world view]. Oddly, this point of view doesn't match Ian's significantly, though [CENSORED historical commentary on religious trends and evolution, brought about by migration to the New World]. On this much we all can agree, [CENSORED comments regarding human behavior, especially in a context involving faith].

elephant
05-27-2010, 05:35 AM
Doug, you are very funny and bright! Your humor in explaining things makes me smile. :)

Doug
05-27-2010, 09:30 AM
When I really want to be funny, elephant, I spell it "humour"! Thanks! I am sure I must have offended a few, though one never knows until the blood spills out of the bucket.

DEE
05-27-2010, 02:54 PM
its ok by me Doug i like the way you explian things too :) DEE x

Doug
05-27-2010, 11:56 PM
(Dee- I won't let anyone know you said so. Ha!)

wgrebel
05-31-2010, 04:40 AM
Dying is a part of life However, no one not even Jesus himself wanted to die. If you read in the Bible he asked his Father to let the cup pass but still said not my will but thine. I am not a very strong Christian but my faith has got me through some of the hardest WG times. I am in remission now because of prayer and I know my improvements are due to prayer. WG will change you and it did me because you realize what is important and what is not. I have my family & girls and thats what is important. We need to be prepared for death because it will come but while were here we especailly weggies need to make the most out of every day. John 3:16, John 14:6, Romans 10:9-10 & 13. God Bless & each of you have a wonderful Memorial Day.
Tim

Jack
05-31-2010, 06:38 AM
Recent experience has reinforced my view that life is only worth living up to the point at which quality of life has dissappeared. I have recently witnessed many cases of people with broken minds and bodies who were never going to make any sort of recovery that I would think of as acceptable. Should I ever reach that point, I would wish for no further treatment because I would consider that my life was over. To me, that would be acceptable since I have been living on borrowed time for years and this would be a natural end. I have even planned my exit route should such an eventuallity occur - I think that if I were to refuse food and medication, I would not have long to wait. All those close to me know that this is my wish and would not intervene.

I feel most for those I would be leaving behind and have tried to keep everything in order and have made financial provision for them. I hope I have prepared them to handle the emotional side of loss too.

Carly Hedge
07-13-2010, 09:24 AM
Personally, I was always thought as a weird kid. But now since I have been diagnosed with this condition, I consider myself special in my own little way. But, I don't take things for granted anymore-nothing! I cherish the amount of time I get to have with friends and family. Some friends think I am strange because I cried on New Year's eve because-gosh darn it I made it to 2010.
I try to be more positive and up beat because it could be worse. I had a birthday that I really wanted..I didn't want anything but my family together all in one place to celebrate that I was able to celebrate another year. I cried when I just celebrated my husband's recent b-day. Other opportunities have come up like helping my sister move down to NC for school, go to St. Paul, MN with another ill friend, then to celebrate a family reunion for my dad's side of the family which on a sad note -I would have been the fourth relative to have passed if I didn't get treated in 2009. I am also trying to make it up to NYC to hang with a cousin that I will meet for the 1st time at the family reunion. So I try to seize the day as much as my body lets me. I try not to pass up anything, anymore. And for all the other people in the world that rush around and take things for granted. I feel sorry for them. But I am not afraid of death. I just am worried about everyone that I would leave behind that I love.

LisaMarie
07-13-2010, 11:38 PM
It amazes me how when I need to express ...cry or vent the right thread is here....I am also a christian and know with life comes death...I am so new in all of this WG that I am still mad and angry...but inside I know it is all in God's Plan and I may never know why...I also know that I pray for God's will be done...not a miracle to be healed....I do not want to leave my children before they grow...I want to share in all their good and bad experiences...I want to wipe their tears and hug and kiss them.....I am trying not to sweat the small stuff...decrease my stress and live life one day at a time...which for me is very hard...I know I am saved and will spend eternal ife with God In heaven...but I am also human and at times the flesh takes over and I am sooo scared..part of me want to make all my arrangements so no one has to deal with it when I am gone...as premature as it sounds...we truely do not know how much time we have...right:confused:...I t is fustrating because at times we hear you have to have faith ...God will take care of it....If I have have fear it does not mean I have no faith...it just means I am Human...flesh and bone...not perfect.....This is not how I planned my life and the unknown sucks ...but it is what it is....so while I am in Florida I plan to do alot of mediatation ....chop off my hair before the chemo makes it fall out...see I can controll some things and come back refreshed and renewed to start IV CTX or Rituxan....I have not seen my best friend in 7 yrs..so we plan on doing alot of catching up...wish me luck...thanks Jack for starting this thread....you remind me of my wise grandpa...he always knew what to say and when!!!!!

Doug
07-14-2010, 12:32 AM
Carly, well put. I find I am much more emotional than I was before, and these formerly taken-for-granted occasions (perhaps even people!) take on a new importance, a new depth of love that just spills over in tears of joy. For being alive.

LisaMarie, you will be pounced on for expressing Christian beliefs on this forum (it has been my experience). I've wondered if we, Christians, need a separate link entitled "Christians talk about faith and WG- stay away if you can't handle it" because many of us regard our faith as a big part of our healing- and feelings about death, yet non-Christians seem to think reading these things is aggression against them rather than a simple expression on one's faith.

Faith and healing: I can't separate the two. Yet there is a rule on this forum not to bring religion or politics into discussion. Posting here is to agree to those conditions.

Ordinarily I would post this sort of note as a private message, but there is a generally hostile attitude against Christians on this forum that I think reveals a bit of hypocrisy when other belief systems (from atheist to you name it) come up in comments, without challenge. "Respect my beliefs, but your beliefs are offensive to me, and I won't have anything to do with them." Something like that.

There are too many valuable things posted on this forum, beyond this sticky issue, for me to stop coming back to it, but I do believe this will be my last post.

(P.S. I may disagree with some of you on matters of faith, but I do love you all, and am encouraged by your victories, saddened by your set-backs. When you need it, I even secretly pray for you.)

LisaMarie
07-14-2010, 01:14 AM
Carly, well put. I find I am much more emotional than I was before, and these formerly taken-for-granted occasions (perhaps even people!) take on a new importance, a new depth of love that just spills over in tears of joy. For being alive.

LisaMarie, you will be pounced on for expressing Christian beliefs on this forum (it has been my experience). I've wondered if we, Christians, need a separate link entitled "Christians talk about faith and WG- stay away if you can't handle it" because many of us regard our faith as a big part of our healing- and feelings about death, yet non-Christians seem to think reading these things is aggression against them rather than a simple expression on one's faith.

Faith and healing: I can't separate the two. Yet there is a rule on this forum not to bring religion or politics into discussion. Posting here is to agree to those conditions.

Ordinarily I would post this sort of note as a private message, but there is a generally hostile attitude against Christians on this forum that I think reveals a bit of hypocrisy when other belief systems (from atheist to you name it) come up in comments, without challenge. "Respect my beliefs, but your beliefs are offensive to me, and I won't have anything to do with them." Something like that.

There are too many valuable things posted on this forum, beyond this sticky issue, for me to stop coming back to it, but I do believe this will be my last post.

(P.S. I may disagree with some of you on matters of faith, but I do love you all, and am encouraged by your victories, saddened by your set-backs. When you need it, I even secretly pray for you.)
Doug
I hope you are wrong about the pouncing....I have found acceptabel and love at this forum...we are a multicutural group in every sense of the word...I can not judge any one for anything....i can disagree but not judge,,,I am not perfect or without sin.....I know we all go through doosey of days...I have had my share and everyone here has helped me outmore than they will ever know...I hope this will not be your last post...keep your chin up and I willl pray for peace for all of us..and a big hug

Jack
07-14-2010, 01:16 AM
you will be pounced on for expressing Christian beliefs on this forum (it has been my experience).
You won't get pounced on for posting your beliefs in this thread, by common consensus it has been declared an "open to religion" zone. I think the nature of the thread makes that inevitable.
As for expressions of faith made in other threads, I think it is a fairly common rule of most Forums to prevent inter-faith bust ups. Simple expressions of mentioning people in prayers seem to pass without comment and I have not noticed any hostility towards Christians in particular. However, there may be an argument for starting a Faith section. Perhaps you should raise it in a new thread as a subject for discussion, perhaps in the Website Issues section?

Tell you what - I'll start one myself. :)

Here - http://www.wegeners-granulomatosis.com/forum/website-issues-feedback-announcements/930-arguments-against-religeous-faith-section.html#post19266

LisaMarie
07-14-2010, 01:19 AM
Recent experience has reinforced my view that life is only worth living up to the point at which quality of life has dissappeared. I have recently witnessed many cases of people with broken minds and bodies who were never going to make any sort of recovery that I would think of as acceptable. Should I ever reach that point, I would wish for no further treatment because I would consider that my life was over. To me, that would be acceptable since I have been living on borrowed time for years and this would be a natural end. I have even planned my exit route should such an eventuallity occur - I think that if I were to refuse food and medication, I would not have long to wait. All those close to me know that this is my wish and would not intervene.

I feel most for those I would be leaving behind and have tried to keep everything in order and have made financial provision for them. I hope I have prepared them to handle the emotional side of loss too.
I send you love and a big hug...I am soo grateful to have met you and I too have made my wishes known ..I have an advance directive...My family may not agree but it is my wishes and I hope lessens the burden of those hard end of life decesions....I hope when the good Lord takes me I am asleep dreaming of the beach with the ocean tickling my toes...stay strong and may God let us keep ya alot longer...your are a tremdous support and guide in this nastey WG disease

staystronglivelong
07-14-2010, 01:49 AM
I do not want to die. I am afraid of suffering and pain with death and I do have young children I would like to see live to adulthood. I want to have grandchildren. I want to outlive my mother and my grandmother.

I think that WG reminds me that we are all broken. Even when you are whole you could be, potentially, at any time, broken, physically, mentally, spiritually. I think that it's good to be able to look into that abyss and and say, "I'm still here." It has been my horrendous misfortune, and great gift, to have this disease. Easy for me to say, and feel, because most of the time I feel pretty good except for my ankle. I think of all of the others who are broken out there that I don't even know about, like many don't know about me, and I try to be kinder, more patient, more empathetic. I wonder about the pain they are hiding.

I have had a good life so far; I have no regrets. I have never once thought "why me?" with this disease. Why the hell not?

Needing the doctors I do need, I am grateful that I have the insurance that I need and I live right outside of what I consider to be one of the greatest cities in the world. I remember right after 9-11, we all had signs that said I <heart> New York more than ever, and that's still how I feel. We were all so, so, close to death then...so much closer than I feel now.

There have been times in my life when life went from one thing in an instant to another: "Your father' is dead" "I do" "It's a girl" "It's a boy" "The blood test is back and shows that you are positive for Wegeners" "You will need surgery to fix your windpipe -- you do not have even two months to wait." Everything goes quiet and all you can hear is the blood rushing through your veins. And even in that moment you know the news is not all bad or its not all good. It's just the first step into a new world. I hope that death is like that too.

Wow, thanks for that, that was amazing to read, made me cry though. My husband has WG and we have a 1 year old daughter. I've been so devastated by this and frightened what the future holds in store. But I guess I should keep my chin up and thank god for each day as it comes.

Col 23
07-14-2010, 02:15 AM
Carly, well put. I find I am much more emotional than I was before, and these formerly taken-for-granted occasions (perhaps even people!) take on a new importance, a new depth of love that just spills over in tears of joy. For being alive.

LisaMarie, you will be pounced on for expressing Christian beliefs on this forum (it has been my experience). I've wondered if we, Christians, need a separate link entitled "Christians talk about faith and WG- stay away if you can't handle it" because many of us regard our faith as a big part of our healing- and feelings about death, yet non-Christians seem to think reading these things is aggression against them rather than a simple expression on one's faith.

Faith and healing: I can't separate the two. Yet there is a rule on this forum not to bring religion or politics into discussion. Posting here is to agree to those conditions.

Ordinarily I would post this sort of note as a private message, but there is a generally hostile attitude against Christians on this forum that I think reveals a bit of hypocrisy when other belief systems (from atheist to you name it) come up in comments, without challenge. "Respect my beliefs, but your beliefs are offensive to me, and I won't have anything to do with them." Something like that.

There are too many valuable things posted on this forum, beyond this sticky issue, for me to stop coming back to it, but I do believe this will be my last post.

(P.S. I may disagree with some of you on matters of faith, but I do love you all, and am encouraged by your victories, saddened by your set-backs. When you need it, I even secretly pray for you.)

Hi Doug,
I have no issues with religious beliefs however I do get a bit annoyed with generalisation and stating there is a general hostile attitude and you will be pounced upon is a bit over the top. Sometimes rules are in place for a reason or from experience. This group is a united group whatever our beliefs and to split us by our religious beliefs would be very sad. This is a support group what ever religion, culture etc.. and as such should be respected for the initial reason it came about.
Col 23

JanW
07-14-2010, 02:44 AM
I don't think that people get pounced on for religious beliefs (and as Jack says I've seen many "You're in my thoughts and prayers" pass with no comment at all.

I am, by the way, a Christian and am more bothered, actually, about people on here who talk about visualization, positive thoughts, and other types mental things that one can do to maintain remission or at least control over the disease. I think that these things can make you feel psychologically better about having WG, however, it's the flip side of 'well, if you're negative, you'll always be sick' and "if you're positive you'll always be or mostly be well" that I don't care for. Many people who are horrible inside lead perfectly healthy lives. Just because I don't believe that positive thoughts play much of a role in changing the course of this disease (or any), doesn't mean that others shouldn't or talk about it.

Jack
07-14-2010, 02:44 AM
Some strongly held views expressed there. I hope that if other members disagree they will just let it pass. :)
Rather than repeat my own post. ;)

Perhaps part of the discussion in this thread? - http://www.wegeners-granulomatosis.com/forum/website-issues-feedback-announcements/930-arguments-against-religeous-faith-section.html

(Sorry - I'm starting to act like the Thread Police! I'll shut up now. ;) )


.

Col 23
07-14-2010, 03:11 AM
Ive had the day from hell today and I am very negative and as I have expressed before I just try to be a bit more positive and visualise getting better and hope that works for me psychologically and I shared that.
I have never suggested that if you have a positive attitude your will get better or if you are negative you wont. I have also spoke about knowing there is no cure and being realistic.
I do not judge anyone for there religous or spiritual views I just did not want to be included in a generalisation.
Col 23

elephant
07-14-2010, 04:29 AM
I hear what your saying JanW. I try to be positive and think positive...it is hard at times and then there is the guilt that I feel ...how come I am not feeling better yet??? Because I have been thinking positive??? Well just being honest. Keeping it real.

JanW
07-14-2010, 06:14 AM
I wasn't speaking about anyone in particular, but I do have to say that if you said "the power of positive thoughts" and the "power of prayer" I believe that the former would be viewed more favorably than the latter on these board when they are really just two belief systems.

Sangye
07-14-2010, 12:17 PM
I also get annoyed at generalizations about who feels what about which religion. I have close friends of all faiths and we have mutual respect for each others' beliefs.

Doug, I found Lisa Marie's post to be a lovely expression of her faith and its importance in sustaining her. I've suggested before that you start a blog for Christians with Wegs. You're a gifted writer and can engage people in good conversation. I understand how important your faith is to you. A blog would give you the opportunity to share it with others who are like-minded without concern for stepping on toes or being hurt. But please, no more "warnings" to other members. That feels divisive to me.

Col, rock on. You expressed exactly how I feel.

Jan, I totally agree about how positive thinking can sometimes be used as a stick to beat oneself. I've had friends who implied (or outright said!) that if I just thought more happy thoughts I never would have gotten Wegs or at least I'd be cured. As if all suffering could be eliminated so easily. My philosophy is to try to keep my mind positive in arelaxed way, not forcing myself to smile or recite happy thoughts when I'm actually not happy. Having said that, I truly don't mind if others choose to do it, I only mind when they tell me Wegs is "my fault." I think you and I are on the same page.

Everyone, let's remember first and foremost that we are all in need of a safe place to share. Of all people, we Weggies know that life is too short for conflict and strife.

Carly Hedge
07-14-2010, 12:48 PM
Everyone, let's remember first and foremost that we are all in need of a safe place to share. Of all people, we Weggies know that life is too short for conflict and strife.

Hear! Hear! :)

Palmyra
07-19-2010, 01:54 AM
Thank you lightwarrior and Jack.
I am the primary caretaker for both my father (81, and dying of advanced Parkinson's disease) and principal advocate for my oldest daughter (24, Crohn's disease and Weg). I have struggled with being 'emotionally reactive' in previous dire situations, and have found acceptance and wisdom can be elusive when stressed with concern for someone you love. I practice finding wisdom daily, and work on small parts of myself at a time. This is life, no?

So death is something to meet with acceptance and wisdom as well. I really appreciate lightwarrior's shared experiences through her work. A very timely message for me.

Sangye
07-19-2010, 07:48 AM
Beautifully stated, Palmyra. :)

flana
07-26-2010, 06:51 AM
Absolutely... It's a matter of continual course correction... having accepted what I got from God... here's my e-mail to my Dad...

Daddyji, pairipainna (a gesture of paying respect by touching elders' feet)… I have no regrets, I have no complaints from God… He had a plan for me and he executed well. No complains what so ever. My worry is not for me if I live longer or not. Everyone who came, must go. They came to earth only to go. We all just tend not to think about it and distract ourselves with the worldly matters. We think we can evade death if don’t think of it. Like the cat when it drinks the milk. It thinks that by closing its eyes no one else can see it. Death is constant. We will all go through it one day. Some late, some early… However if I leave early, you must not lament. I know as a father your heart will ache, but preparing yourself for it will make it a tad bit easier. It is very likely I will live long, but chances of that not happening have become a bit higher with this disease. But as I said, I worry not for myself but for my kids and you. If I had a lot of money I would have not worried at all. But that is not the case.

If God has plans for me, he better have plans to take my family under his wings and protect them when I am not around. You thought God was a saint? Bloody hell not!… If he exists, he’s a bloody prankster! But I am watching him, he probably does not know that… If he messes with me any further, I am going to give his boss a very strong 360 feedback for the next year and see to it that he gets a demotion next year :)

Don’t worry Dad! No negative feelings… Things are going to be just fine, with or without me!

Eager to see you when you come visit us… Love you lots!

Jack
07-26-2010, 07:18 AM
That was a very personal thing to share with us flana, Thanks.

JanW
07-26-2010, 07:30 AM
Thank you for sharing that, flana. I had come across your blog and read some of it prior to my own dx (January 2010).

pberggren1
07-26-2010, 07:32 AM
Thanks flana for sharing that.

drz
07-26-2010, 07:55 AM
I hear what your saying JanW. I try to be positive and think positive...it is hard at times and then there is the guilt that I feel ...how come I am not feeling better yet??? Because I have been thinking positive??? Well just being honest. Keeping it real.

I think this attitude is some times implied or absorbed due to many comments you hear about how a postive attitude will help you heal or recover. It may, but I don't think it follows though that if aren't getting better, it is because you don't have right attitude, or aren't complying with treatment. Some times things just happen for reasons we don't understand.

pberggren1
07-26-2010, 07:59 AM
I have to totally agree with you there drz.

Jack
07-26-2010, 07:14 PM
I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it helps.

Sangye
07-26-2010, 10:12 PM
Totally agree with you drz and Jack-- very nice explanation of the positive thinking thing.

Raj, what a beautiful letter to your Dad. Thank you for sharing it with us. :)

Jack
06-23-2011, 05:56 AM
Just thought I would resurrect this thread from its resting place! :wink1:

A TV program was shown recently that caused some controversy here in Britain. It was hosted by Terry Pratchett, a best selling Science Fiction author who is developing Altzheimer's Disease and was on the subject of assisted suicide. I'm not sure how the law stands in your country, but here, although suicide is not illegal, assisting someone to do it is. This means that if you choose your own controlled method of dying, you have to do it while you are still fit enough to travel to a country where getting help is allowed. This is probably too soon for most. The program followed one man and his wife to Switzerland where his death was organised and was shown. It also showed another who had chosen to spend his last days in a Hospice. It was an interesting program and although the method will only appeal to a few, it is not one that is currently open in the UK without legal risk to others.

I don't think it is something that appeals to me, but I would like to be allowed to go when my time comes. Even this seems to be quite difficult to guaranty in the UK since we don't seem to have a very well established system of Final Wishes instruction and Medics are often afraid of being sued if they let you die.

watersedge
06-23-2011, 06:49 AM
My dad always had strong views on how he wanted to die. He always wished that he would die in his sleep. He always made it clear that if he were to get very sick and have no quality of life and not be able to look after himself he would rather die. The night he died we had been down at the hospital that evening, the last thing he said to my mam was bring me home, we think now that maybe he knew. The week leading up to his death he really seemed to improve, he was sitting out, talking, not sleeping so much, even the doctors commented on it, they were ready to put him back on the cyclophosphamide that Monday. I have looked up the dying process so much lately, they say that the dying process can start days to weeks beforehand and that the person always seems to appear to be getting better before they die.
When daddy was in hospital he lost his watch, we asked the staff but it could not be found, we bought him a new one. The night he died they said he had medication and settled down for the night around 11 and went to sleep, at 4am, they checked him as he was on a tpn feed, he was asleep, they didn't realise until around 6am when they tried to rouse him that he had a stroke. The ward nurse said for all the world he just looked like he was asleep, they were unable to rouse him and he was unresponsive to pain. Of course what I am bitter about is that they did not ring us until 8am that morning to tell us he had the stroke, by the time we arrived he had gone into cardiac arrest. We found his watch at home a few days later, it had stopped at 11.40, we believe he died before 12 that night which fell on his mothers birthday, we believe she came for him. Although they recorded his death as the next morning he had gone in mind and spirit. The consultant assured me that he would not have knew or been in any pain and it was very likely that it happened in his sleep which is the way he wanted to go. I believe there is something greater, that we all go to a better place.

Hopeful
06-23-2011, 06:32 PM
This is a very interesting discussion! Everyone has their own perceptions (truths) about what death is and all we can do is share them and maybe, just maybe, they will help and comfort others. My personal truth is that I died for a couple of minutes when I was a teenager. No, not a diagnosed thing, though I have a minor heart valve irregularity. I was well rested and sitting in Spanish class and my head fell on my desk. Next thing I know I'm being guided by a man (angel) through space towards a light, decreasingly sad about leaving my family and increasingly happy to be going. I was not afraid. Then I'm sitting next to Jesus at a table and He turns to me and says to the angel "It's not her time. Take her back." Then BAM! My head jerked up from my desk and I'm breathing hard, like I'd just been born and was taking my first breath, and, oddly, a bit depressed that I was sent back. The following Sunday I was switching TV channels looking for some cartoons and all of a sudden the Kathryn Kuhlman show was on. She is/was an evangelist. Anyway, she and her guest were talking about near-death experiences and it got my attention. What they described exactly fit what happened to me. So I try to hold on to this memory and all the feelings.

For me, before diagnosis (March 2009) I felt I was at the end of my rope and my life. I was tired of feeling rotten, being unable to get out of bed to go to the toilet, and I just didn't care anymore. I found out that when you reach that point, that ultimate rock-bottom, you can hold your breath and just die despite the autonomic nervous system reflex that normally keeps you breathing. I have read that Wegs dulls that reflex, and it is probably a similar experience in the elderly when the body no longer works properly. What made me breathe again? The sudden thought that I had finished selecting funeral music for what I thought was my very, very, distant death the month (June 2008) I started to come down with (Wegs) symptoms! The black humor of it just had me laughing, and still does! The Divine, however you perceive Him/Her/It, has one helluva sense of humor!

Finally, my personal truth. I feel that life is a journey that does not end with the death of our physical body. When we die we just change forms and continue on our journey.

Hal
06-23-2011, 11:47 PM
Last summer I was so sick, so uncertain of why my body was self-destucting. Once I started taking the drugs and things settled down, I took this as a reality check that I am mortal. Yes, for the forseeable future my quality of life is not what is used to be, since I cannot get out and enjoy the great outdoors like I used to. Hopefully over time the Neuropathy will heal to the point that I can once again hike for hours and stand on the edge of a sheer cliff and enjoy the ocean views.

Will my life expectacy be shortened? Only time will tell. There is no point in dwelling on that, so I am taking the attitude that I had better relish each and every day! Enjoy Life!

One practical thing I did do however, was write a new Will. I realized I never had one, and it was important to me that my loved ones be looked after. I sure hope that Will stays locked away in my lawyers Will Safe for a long time!

Interesting topic for sure.

Sangye
06-24-2011, 08:37 AM
This is such an interesting thread. Thanks for resurrecting it, Jack-- no pun intended?

pberggren1
06-24-2011, 10:50 AM
Speaking of Resurrection........LOL:wink1:

Jack
06-24-2011, 09:37 PM
Sorry, it was entirely intended! :biggrin1:

LisaMarie
06-24-2011, 11:45 PM
ok I have come a long way since this post first opened....and have had a near death experience since then with WG...so I am a Christian and believe I will go to heaven but now I live each day to the fullest...try to make it to as many games for my kids that I can and am trying to learn to forgive....I have learned that when you don t truly forgive you hurt only yourself...so I am working on my list....and slowly learn to accept WG for what it is and that though I may never be the same ...I can always get worse so i better be happy with what I have.....I have also planned my new will but can not enact it till I have have the extra money....My husband is back in denial so I have learned to lean on ya ll for support and venting....since nobody knows when we are going to die...I hope it is in my sleep after a wonderful time spent with my family...so they remember the active me...not the weak tired me:crying:

MCC
06-30-2011, 02:40 AM
I try not to dwell on it too much.

Before I was diagnosed for 24 hours they thought I may cancer and sent a very doom and gloom cancer specialist to see me.

I'll never forget the horror I felt when I really thought I was going to die very soon. I was terrified and shocked that I was so scared - in those 'what if' scenarios I never thought I'd react like that but I suppose it's because I'm not religious so I don't have the comfort of thinking there is something else after we die...

Jack
06-30-2011, 03:17 AM
I don't follow an organised religion, but I am still fairly comfortable about dying. If there is nothing to follow after death, then what's the problem? You'll know nothing about it anyway. If you are wrong and there is a whole new existence, then it will be an adventure.

My main concern is for my family and how they will cope, but everyone does somehow and at least they will be reasonably well provided for.

MCC
06-30-2011, 03:29 AM
I don't follow an organised religion, but I am still fairly comfortable about dying. If there is nothing to follow after death, then what's the problem? You'll know nothing about it anyway. If you are wrong and there is a whole new existence, then it will be an adventure.

My main concern is for my family and how they will cope, but everyone does somehow and at least they will be reasonably well provided for.

Yep I agree with you, that's why I was suprised at my reaction. Perhaps it was more a fear of not living anymore, it was kind of a highly charged with emotion time!

Now when I think about it doesn't hold the same fear.

Jack
06-30-2011, 03:54 AM
I think it gets more scary the closer you get! It is easy to rationalise when you are feeling well and it is just a point of speculation, but when the reality comes knocking on the door it is much more difficult. During recent episodes of feeling unwell, I have had odd feelings wash over me and thought "OK what happens next? Is this it?" Perhaps it is just practice and will make the real event easier when the time comes.

Kathie28
06-30-2011, 12:38 PM
This is a very interesting subject. I think my fear of dying is mostly related to leaving my loved ones behind. I don't want to miss a moment of my son growing up. I worry about that everytime this disease hits me hard. I am a Christian as well so I believe in heaven. A very good book I just started reading called
'Heaven is for Real" is a good read for anyone who does believe or is curious. It is the true story of a 4 year old told to his parents and his experiences when he had an emergency surgical procedure.
Of course I do hope like most to just dye in my sleep when that time comes. I would not want to be kept on life support for a long time when there was no hope.

drz
07-02-2011, 07:14 AM
Yep I agree with you, that's why I was suprised at my reaction. Perhaps it was more a fear of not living anymore, it was kind of a highly charged with emotion time!

Now when I think about it doesn't hold the same fear.

Last year when I was certain that I wouldn't make it to morning I called my daughter over to apologize for leaving her and everyone. I felt sadness about leaving them and sorry they would be sad about my leaving. Then I just said good by and let go. No white lights, or people waiting in the light, no pain, no fear, just a sense of relief that the struggle for air would be over and drifted to sleep. But they weren't willing to let me go yet and she ran for nurse who came and cranked up the breathing machine to a high setting and I woke up in the morning feeling much better and a bit surprised I was still alive.

It was my third near death experience and the others felt much the same except no chance to say good by. To me i suspect dying will be much like having anesthesia before surgery or my intubation experience or falling asleep except you will wake up dead and no one knows what that will be like.

It seems to me from watching people dying from a chronic illnesses that death is generally a peaceful experience and welcomed relief from the the pain and suffering unless they have a lot of unfinished business they need to work through first.

I think a program like Hospice is a great aid in helping one live well through their last days and plan to use their services if possible. Of course if death comes quickly and unexpected with no advance warning that won't happen.

Like Yogi Berra said, "It is difficult to predict things, especially the future".

watersedge
07-02-2011, 07:55 AM
Would it be easier to die if you had your family around you and somebody to hold your hand or would it be harder to let go knowing that they are upset and you are leaving them?

Sangye
07-02-2011, 09:10 AM
It probably depends on your family. Some would be very easy to say goodbye to! :laugh:(Trying to inject a little humor here.)

pberggren1
07-02-2011, 09:11 AM
So true Sangye. Thanks for the humour.

watersedge
07-02-2011, 09:04 PM
Gosh, sorry for the post folks, I suppose it was a bit depressing but living through the aftermath of wegeners at it most destructive is not a very humourous place to be and a lot of thoughts you have tend to be on the sader side of life. I do realise now that grief is a personal journey. I am sorry for all the doom and gloom posts, they are probably not to everyone's liking.

jkthomas56
07-02-2011, 10:04 PM
Interesting topic but one i have thought about a ;lot, especially when I did not know what was wrong with me. I, like many others in this post, came to grips with a lot of things in my life that had been plaguing me. Being able to off load that baggage and realize how important family and friends are and just living every day to its fullest are now my drivers. When my time comes I am ready. I have never been particularly religious, but I have what I would call faith that there is something on the other side and I am not afraid of it.

We have all been dealt a terrible disease to deal with, but in many ways it was a positive in my life. At least now I can enjoy my time here better than I was before. Remember, it is the darkest before the dawn, and it is what you make of it. I wish everyone fighting this disease a beneficial outcome and hope the suffering is kept to a minimum. You are all good and caring people and at least deserve that.

Take care all, and fight this affliction every day with all your will.

Sangye
07-03-2011, 12:58 AM
Gosh, sorry for the post folks, I suppose it was a bit depressing but living through the aftermath of wegeners at it most destructive is not a very humourous place to be and a lot of thoughts you have tend to be on the sader side of life. I do realise now that grief is a personal journey. I am sorry for all the doom and gloom posts, they are probably not to everyone's liking.
Your posts aren't doom and gloom, watersedge! ALL voices and experiences are welcome here. My mother and sister left me within 3 months of being dx'ed and never looked back, so that's what I was thinking about when I made my comment. I didn't think about how it might come across the way it did. In general I try to find humor in everything. It's a coping mechanism. I'm sorry if I inadvertently caused you pain. :sad:

delorisdoe
07-03-2011, 01:09 AM
Watersedge...most of us that are afraid of dying are afraid of how the loved ones will cope when we are gone so to me hearing your thoughts is actualy helpful. I would expect you to have depressing thoughts and fear and questions as would any of my relatives. That you came here to tell us how you are coping after the death is a gift at least to me.

drz
07-03-2011, 02:16 AM
Would it be easier to die if you had your family around you and somebody to hold your hand or would it be harder to let go knowing that they are upset and you are leaving them?

I think it depends upon the family and their attitude toward death. I know when my mother was dying the Hospice worker encouraged us to "give her permission to go". Death was only way she would get any relief from her pain. Her husband was not willing to let her go though and this kept her in a state of struggle for a long time and prolonged her death. If the family is supportive and accepting of your death then I think their presence would be a great asset and comfort when dying. When your family is pleading for you not to die it is very hard to leave them and I believe this is the reason many of us are still here. There are limits to what the will to live can do but I believe it is a very important factor in what happens.

I would like to be like my grandfather in dying. There were three times his family was told he is probably going to die soon. He told his family not to worry as he was not going to die at these times. A few months before he died a couple decades later he told his wife to call the children to come visit to say good by. I was unable to come see him since I was on other side of world and he asked about me coming to see him several times. After a couple weeks he told my grandmother that he couldn't wait any longer for me to come see him and that she should say good by for him. He died two days later.

maria garcia
09-27-2011, 09:50 AM
Im in tears After reading this post and knowing Jack has passed.:(

watersedge
09-27-2011, 08:47 PM
Just saw this thread and came across a post of mine a little bit back and wanted to apologise to Sangye for taking her up the wrong way. I adore Sangye and she has always been so kind and compassionate to me. I should have known better but was a little oversensitive and emotional at the time.
I've just read all Jack's posts, he seemed to be preparing himself for quite some time, I am glad he had his wish and had a peaceful death. R.I.P.

Sangye
09-27-2011, 10:56 PM
No apology necessary, watersedge! I was not offended in the least by your comments. I felt bad that I hadn't even considered how my comments might have been taken a different way.

I also feel comforted that Jack was prepared and that he had a chance to be with his family and say his goodbyes.

Lightwarrior
09-29-2011, 06:40 AM
Jack is still caring for us, he started this post so we could all come to terms with our mortality. Thanks Jack.

drz
09-29-2011, 11:24 AM
Jack is still caring for us, he started this post so we could all come to terms with our mortality. Thanks Jack.

I think Jack showed us how to do it with some style and class. I wish he could post like "Ghost Writer" and tell us what his adventure is like. I think Jack brought out the best in all of us and his parting left us with a great sense of loss. Hope he is enjoying a peaceful rest which is well deserved.

Widthofacircle
10-31-2011, 12:10 PM
Folks. Please get things into perspective. While WG is a horrible affliction it is nowadays not life threatning, nor is it as bad as cancer, leukemia, heart disease and so on. We are very lucky should we be diagnosed in time and correct treatment is very successful so let,s not depress each other

pberggren1
10-31-2011, 12:14 PM
Folks. Please get things into perspective. While WG is a horrible affliction it is nowadays not life threatning, nor is it as bad as cancer, leukemia, heart disease and so on. We are very lucky should we be diagnosed in time and correct treatment is very successful so let,s not depress each other

My case has been very complicated and has threatened my life many times. Yes, we are blessed to have a diagnosis finally but Wegs is still a disease you cannot turn your back on and just forget about. It requires research and diligence.

delorisdoe
10-31-2011, 12:27 PM
I dont find this post depressing at all. Dying scares me and reading the thoughts of others about dying helps me. Also, like cancer every case is different. Also, the title of this thread hides nothing and it is very clear what this post is about so if it is offensive or too depressing than I would think you would simply not open it.

maria garcia
10-31-2011, 01:03 PM
My case has been very complicated and has threatened my life many times. Yes, we are blessed to have a diagnosis finally but Wegs is still a disease you cannot turn your back on and just forget about. It requires research and diligence.

I agree with phil, Wegeners can be life threatning. So its ok to be scarred. As long as we don't give up.

mama2005
10-31-2011, 01:11 PM
Folks. Please get things into perspective. While WG is a horrible affliction it is nowadays not life threatning, nor is it as bad as cancer, leukemia, heart disease and so on. We are very lucky should we be diagnosed in time and correct treatment is very successful so let,s not depress each other
This disease may not be life threatning to you now but let me tell you it can be. When I was placed into a comma my family was told to say their goodbyes to me because they really did not think I was going to make it. So I am glad that you have not felt a close to death experience but I do find it very important to be prepared for it. I am not scared for death but I fear for my children (3 & 6) and how they will deal with it.

Al
10-31-2011, 05:22 PM
Folks. Please get things into perspective. While WG is a horrible affliction it is nowadays not life threatning, nor is it as bad as cancer, leukemia, heart disease and so on. We are very lucky should we be diagnosed in time and correct treatment is very successful so let,s not depress each other

Actually, this disease can be, and often is, "life threatening". At the very least, it is a life-changer in many ways. We have all seen the noose and we know the hangman by first name, even if our time has not yet come. This, I think, is why we tend toward gallows humor. The humor we need on a daily basis, even if we would prefer putting off the hanging for a while. In this regard, I think our thoughts on life, and its endpoint, are appropriate on this forum and should be welcomed.

Al

pberggren1
11-01-2011, 03:02 AM
I dont find this post depressing at all. Dying scares me and reading the thoughts of others about dying helps me. Also, like cancer every case is different. Also, the title of this thread hides nothing and it is very clear what this post is about so if it is offensive or too depressing than I would think you would simply not open it.

What about the milk?

delorisdoe
11-01-2011, 05:21 AM
What about the milk?

You can have some mllk:w00t:

drz
11-01-2011, 07:25 AM
Folks. Please get things into perspective. While WG is a horrible affliction it is nowadays not life threatning, nor is it as bad as cancer, leukemia, heart disease and so on. We are very lucky should we be diagnosed in time and correct treatment is very successful so let,s not depress each other


I too almost died from it as have a number of others here. Several members have died either from the WEGS or from damage it caused or side effects of the treatment. I view it as life threatening and expect that someday i might well die from an infection caused by my poor immune system or a complication of WEGS such as loss of kidneys or other major organ.

Many people with cancer can be cured and many people with heart issues can get problems corrected by a pace maker or other means, but the damage to my body from WEGS is mostly irreversible at this point. True some people with mild cases can attain a long term remission and live a relatively normal life again and with early treatment most flares can be managed successfully, but the risk of relapse or big flare never goes away.

Lightwarrior
11-01-2011, 08:42 AM
Today I am sad, one of our nurses who was a seasonal and worked in our ICU from Jan to May every year for the last 15 and was a good friend to almost all of us was found murdered in her car on Saturday in Riverside. I really thought I would be the first one to depart.

Al
11-01-2011, 09:02 AM
Today I am sad, one of our nurses who was a seasonal and worked in our ICU from Jan to May every year for the last 15 and was a good friend to almost all of us was found murdered in her car on Saturday in Riverside. I really thought I would be the first one to depart.

This is horrible and heartbreaking. To be sure, all life is a crap shoot of sorts: We pays our money, we takes our chances. And sometimes the odds come out against us. I look at it like Let's Make a Deal: We need all those doors to open; yet, we know from the beginning that behind one of those doors, we lose. In the meantime, we play the game, and may as well have some fun playing, because in any case we are not allowed to quit the game. Still, this is a terrible way to go, and not only for the victim, but also the victim's friends and loved ones. My heart goes out to you.

Al

Dryhill
11-01-2011, 09:20 AM
Today I am sad, one of our nurses who was a seasonal and worked in our ICU from Jan to May every year for the last 15 and was a good friend to almost all of us was found murdered in her car on Saturday in Riverside. I really thought I would be the first one to depart.

What a waste. Like Al my heart goes out to you.

elephant
11-01-2011, 12:53 PM
I am so sorry to hear that light warrior.

Sangye
11-01-2011, 01:17 PM
I too almost died from it as have a number of others here. Several members have died either from the WEGS or from damage it caused or side effects of the treatment. I view it as life threatening and expect that someday i might well die from an infection caused by my poor immune system or a complication of WEGS such as loss of kidneys or other major organ.

Many people with cancer can be cured and many people with heart issues can get problems corrected by a pace maker or other means, but the damage to my body from WEGS is mostly irreversible at this point. True some people with mild cases can attain a long term remission and live a relatively normal life again and with early treatment most flares can be managed successfully, but the risk of relapse or big flare never goes away.
As someone who's nearly died from Wegs and also from complications, I agree with everything you said, drz.

Sangye
11-01-2011, 01:18 PM
Oh Lightwarrior, how awful! Sending love and prayers your way. :sad:

drz
11-01-2011, 01:27 PM
A former work colleague is in hospital or hospice now dying from a skin infection secondary to lymphoma which also impairs your immune system just like GPA. He and I share a history of having serious diabetes too which also reduces your ability to fight off infections and to heal from anything. Both my wife and I consider ourselves at high risk from having a similar fate some day but hope it is still a long way off. At least he is resting peacefully with no pain thanks to good end stage care which I guess is as much as we can hope for when the end comes to us. I find some of the benefits of almost dying is elimination of the fear of dying under normal circumstances and increased ability to enjoy more whatever amount of life happens. I wish no one would be the victim of a horrible gruesome and senseless murder and would find that a very fearful and horrible way to exit life. I really wish ghosts of the victims could haunt such murderers the rest of their life.

pberggren1
11-01-2011, 04:11 PM
I'm so sorry to hear this Lightwarrior. I find it so hard to understand why another person would take another person's life.

watersedge
11-01-2011, 08:01 PM
I agree with everybody, this disease is a curse, a serious life threatening affliction and can take your life in the blink of an eye. It is a sly and sneaky disease and you have to be on the alert all the time watching for complications due to meds, infections and so on. I regret the day I ever had to learn its name and what it can do, for all the suffering, worry, pain it brings to sufferers and their' families and friends, for all those people with small children worrying about what the future holds, for those wanting to start families, for those with children suffering with the disease, for children watching a parent suffer, for those watching as their' partner suffers, it is not just the physical side of this disease, it is the mental side of it too. Yes this disease is indeed a plague on all our houses!!

Lightwarrior, I am sorry to hear about your friend to have to die in this way, if somebody has to go you would hope that they would be taken by a more natural route and be able to die peacefully in familiar surroundings, in a caring, comfortable position with pain management and loved ones around. She was somebody's mother, wife, friend, daughter. It just goes to show that there is no hell, we are living it as we speak, I am sure she is in a better place.

LisaMarie
11-05-2011, 03:10 AM
Ok It has taken me a moment to compose my self to comment on this statement...God Bless you if WG has not stolen your life...neverly killed you ...scared you children to death because they never know how Mommy is going to feel or what she is going to be abel to do...I have limited WG...and live with it every day...I own it but it does not own me...on my good days i work and try to play with my kids...but my bad days are harder and at times I push to hard...just because I do not look sick does not mean I am not sick...no offense intended to the writer of this comment ...but you may still be in denial if you think this is not Life threatening

Folks. Please get things into perspective. While WG is a horrible affliction it is nowadays not life threatning, nor is it as bad as cancer, leukemia, heart disease and so on. We are very lucky should we be diagnosed in time and correct treatment is very successful so let,s not depress each other

Lightwarrior
11-05-2011, 06:55 AM
LisaMarie,
I can relate to your comments. Right now, today I feel good so I hope that this weekend I can cook and do laundry, the kind of things that make a home smell good and says to my kids and grandkids that everything is okay and home is warm and safe. Even though life goes on when I am down for the weekend and as soon as I get home from work, I can hear the whispered conversations of my kids and grandkids worrying if this is going to be the time they lose me. They take turns checking on me and even though I try to make my fatigue or pain seem minimal I still see the worry in their eyes.

jola57
11-09-2011, 08:17 PM
There are no comparisons between cancer and wegs. With Cancer you either live or die fairly quickly. Having wegs is a life sentence, it is like having cancer again and again all our lives. I watched my father suffer for 3 years with interferon, plasmaphoresis, radiation, changing from a vital hunk of a man to a shrivelled up husk and die at age 56. I watched my mother beat uterine cancer at age 39 and then bowel cancer at 69, where she was treated by surgeries only that left no real mark. Then I look at myself getting wegs at age 49 and overnight becomeing an 80 year old. Being on pred and chemo for the rest of my life, never again being "normal", being looked at like a freak, judged by my "fat" appearance, not being able to dance, ski, walk trails etc.
How can I compare cancer to wegs or vice versa? Which is better? You tell me.

Sangye
11-10-2011, 03:41 AM
Jolanta, that is exactly how I feel. You expressed it perfectly.

Lightwarrior
11-10-2011, 05:02 AM
Thanks Jolanta your very articulate post framed the discussion for me

LisaMarie
11-10-2011, 05:52 AM
I will have to agree with you both ..Jolanta you stated it better than I could....I tried in my post but I think you di better...Thanks

jola57
11-10-2011, 04:32 PM
Thanks, I just came back from a blissful 2 weeks on Kaua'i. Disregarding my trips to Poland as half business with a bit of pleasure, this is by far the best 2 weeks I had since my wegs nightmare began. Sun, surf, warm water what more can I say. It brought a lot of thoughts of dying and leaving this beauty behind, of suffering and, again, looking at my big clumsy body. Comparing myself to the 20 somethings in their toned bods in bikinis. What more can I say. I came to a conclusion that this is my life sentence I have to get over it and enjoy the time I have left without regret.

drz
11-14-2011, 08:28 PM
If you can survive the treatment, things will get better. This generally seems true for GPA and some types of cancer.

If survival is doubtful and treatment apt to be an arduous which may only increase pain and discomfort, would you choose to try treatment that may kill you or let the disease take its course.

Al
11-15-2011, 01:42 PM
If survival is doubtful and treatment apt to be an arduous which may only increase pain and discomfort, would you choose to try treatment than may kill you or let the disease take its course.

This is a tough decision--even tougher than it looks, because once it becomes necessary to go there, you, the patient, are likely to be not in control of the situation, regardless of your wishes. And a distressed family is not often competent to be entirely rational or considerate of your desires. I think the best you can do is pre-state, firmly, how you feel. Yet your feelings can change, depending on the context. I thought about this a lot this summer when I was asked to speak at the vigil of my old orchestra director. He was 96, with bile duct cancer that was not worth treating, but his mental faculties were sharp to the end. (Oh, they were sharp; oh, I do have stories!) He made his own decisions, some of which his (10!) kids might have taken exception to; but they were his own. Not everyone has this luxury.

Al

me2
11-15-2011, 07:19 PM
Ok Al,
Please share one story, one decision of exceptional resistance or interest that this man was able to make. I haven' thought ahead much admittadly so I'm looking to prime the pump.

Kirk

Al
11-17-2011, 04:29 PM
Ok Al,
Please share one story, one decision of exceptional resistance or interest that this man was able to make. I haven' thought ahead much admittadly so I'm looking to prime the pump.

Let me dig through my files, Kirk. There are plenty of stories; I just have to decide which is or are appropriate....

Al

delorisdoe
11-18-2011, 10:24 AM
Now why do you think you need to be appropriate?

Al
11-18-2011, 03:52 PM
Now why do you think you need to be appropriate?

Sorry. Leigh--I hope never to stoop so low. Anyway, Here is something you and Kirk, at least, might enjoy about a guy that always led life by the nose instead of the other way around. By way of background, I had know Bill and most of his kids (You can do a search on Vilem Sokol, a rather remarkable guy) since high school, so...nearly 5 decades. Bill was a staunch Catholic, and I am sure he took the Prayer of St. Francis seriously, and maybe even literally. But his reward wasn't just in an afterlife; there was enough joy and love in the present one that, as he lay dying at age 96 (but I think he would have felt the same way 50 years earlier), he wasn't afraid of what was yet to come. Anyway, what follows is the conclusion of what I wrote out for his vigil. Of course, in the event I deviated from the script, but it s easier to post the original.

A few days before he died, Eileen and I went to see Bill at the Anderson House. Becky [one of the daughters] was there, but when I entered, he ordered his daughter out. “Okay, Dad,” she said. “I’m leaving, but I’ll be back.” “OUT!” he repeated. “We have big things to talk about!” Now, I had been prepared to stay a few minutes, then make my exit so Bill could get some rest….

…Three hours later, he told us, “you must be getting tired.”

Two days later, we visited again, for the last time. Words came slower, and with more frequent pauses. Sometimes his tongue wouldn’t keep up with his thoughts, and he would stop and spit out the e-n-un-ci-a-tion. And this way he regaled us with a long-form joke about a man on his deathbed. I don’t know how long he had been saving that one, but when he deliver the punchline his wicked grin was a mile wide.

And then, after a few more stories, we said our goodbyes. He then gave us a wondrous blessing. Thus, my life with Bill Sokol was fully recapitulated, first meeting to last. But then he added a remarkable and perfect coda. Needless to say, I was pretty misty-eyed at this point. Bill caught this. He once more looked me straight in the eye and shook his fist. “Now, Al, if you cry on the way out, and people see you, just say, [he grabbed his face], ‘ooh, my beard!’”

Ooh, my beard.

Al

mishb
11-19-2011, 11:56 PM
Al, that is a wonderful story.
He sounds like the character in a book I read called "Tuesdays with Morrie" by Mitch Albom.
Actually most of the books by Mitch Albom make the "thoughts of Dying" just that little bit easier.

delorisdoe
11-20-2011, 12:47 AM
I LOVE tuesdays with morrie

Al
11-20-2011, 06:31 AM
Al, that is a wonderful story.
He sounds like the character in a book I read called "Tuesdays with Morrie" by Mitch Albom.
Actually most of the books by Mitch Albom make the "thoughts of Dying" just that little bit easier.

Never read anything by Mitch Albom. Thanks, Michelle, for the recommendation!

Al

jola57
11-21-2011, 03:36 PM
I spent two weeks sleeping on a La-z-boy in my dad's hospital room attending to him as he did with me when I was little. My Mom came in during the day and I went home to sleep and spend time with my little boys and then came back in the evening for the night. My Dad was very open about dying and leaving us behind. We talked and talked about everything. He has shown me throughout his grave illness (multiple myeloma) what a wonderful gentleman he was. His dignity, kindness and love gave me , and still does, a blueprint for accepting my illness and how to deal with it. My Dad knew on that fateful Saturday morning that it was his last day as he said his goodbye to me and to my Mom, who just came in, he said " I waited for you". I trully hope that when the time comes, I will show the same love and acceptance as my Dad.

Al
11-21-2011, 07:03 PM
I spent two weeks sleeping on a La-z-boy in my dad's hospital room attending to him as he did with me when I was little. My Mom came in during the day and I went home to sleep and spend time with my little boys and then came back in the evening for the night. My Dad was very open about dying and leaving us behind. We talked and talked about everything. He has shown me throughout his grave illness (multiple myeloma) what a wonderful gentleman he was. His dignity, kindness and love gave me , and still does, a blueprint for accepting my illness and how to deal with it. My Dad knew on that fateful Saturday morning that it was his last day as he said his goodbye to me and to my Mom, who just came in, he said " I waited for you". I trully hope that when the time comes, I will show the same love and acceptance as my Dad.

Your Tata sounds like quite a fellow, Jolanta.

Al

gunnyl
11-22-2011, 07:03 AM
Considering what we all have or as family members you are dealing with, this is a good thread. I would say if you have loved ones then you need to do estate planning as a first, we all put it off but now it's more important than ever. As for me, I made my Peace with God while I was still in the Hospital! But to this day; don't pray for myself but rather for my family and other people whom I know are sick or worse off than myself. I don't focus on this subject but every one of us has to admit that it comes into our thoughts from time to time. We're not going to be here forever but then nobody is. Ours may not be as long a journey here as others because of the disease so we need to make the most of every day we have. We have the luxury of knowing that, where others may be oblivious. I spend each day trying to be a better person and a better Father to my children, a better Husband to my wife. I keep a positive attitude and am thankful for the time that I have with them. I have lived in many parts of the World and so I understand that everybody has their own beliefs and I am respectful of them all. Just don't give up on life! As hard as it gets sometimes, life is worth living. When our time comes it will come but keep a positive attitude about life. As a Marine we always say that Attitude is Everything! And it can have a significant affect on the way we live and deal with what comes our way!

jola57
11-23-2011, 03:49 PM
Well said gunnyl. I was diagnosed in 2006 and yet here I am, but two of my cousins died in the last 2 years, one of heart attack and one from a stroke. Both my age. So how can I complain?

Sangye
11-24-2011, 02:57 AM
That was very well said, gunnyl. I love that you think of others' suffering more than your own. That's the key to happiness! :thumbsup:

Lightwarrior
09-06-2012, 09:56 AM
I've been holding off from starting this thread because I was unsure of how comfortable members would be about discussing the subject. However, it would seem from the initial reaction that it is a topic many would like to contribute to or at least read and consider. It is inevitably going to include religious beliefs so if it is OK by Andrew, I'd like to wave the ban for this thread. It would be nice to think that we could consider another point of view without starting a flame war! ;)

Wegener's is a life threatening condition, we all know that. We have also probably considered the fact that if it has not killed us yet (true for most! ;) ) then it may well shorten our life expectancy and quality of life. These things mean that coming to terms with death is something many of us have done, are working on or just trying to avoid thinking about. One way or another, the subject is more real to us than most even though it is a natural part of the life cycle that everyone must face at some time.

My own experience of death has been through that of family and friends. I've seen my parent die very quickly and painlessly in old age, mother-in-law very slowly and in terrible condition and friends through brain hemorrhage and suicide. A real mixture that helps gain an understanding of how transient life is and the many ways it can end. I feel grateful to still be here after surviving Wegener's, but wonder what is in store for the future. I'm not getting any better and that's for sure!

The moment of dying is not something I fear. I have come to terms with its inevitability and have no idea what it will bring. I have no religious beliefs to tell me the answers, but I'm sure that it will either be a great adventure or nothingness, so that would be OK too. The process of dying is something different and I fear a long drawn out deterioration similar to that my mother-in-law had to endure. I've made this known to everyone close to me so that if a decision has to be made on my behalf, they can let me go in peace and with a clear conscience. Withdrawing treatment, feeding and water is fine by me if there is no future that I would consider worthwhile.

The problem with all the plans is that they exist in a future that I can not control. I expect that in the end, I will have to play with the cards that fate deals me as best I can. One thing for sure, I'll end up dead some day.




And so will you. ;)


(Hope that went OK. I was not too sure what direction it was going in, but now the thread is live it will take on a direction of its own.)

Okay, here is the original thread and post by Jack. If anyone wants to continue this discussion I think this is the place to do it. If I remember right the discussion did not get out of hand.

drz
09-06-2012, 01:29 PM
Thanks for finding this and reviving it. Gwen can re-post her comments here if she wishes.

Nice thread in that you can see writing of both Jack and Al and catch a glimpse of why we miss both of them a lot.

Palmyra
09-07-2012, 02:33 AM
Life teaches us many ways to deal with fear. Some ways are healthy and others not so much. I do my best to find healthy ways to cope with all obstacles put in my path. But WOW, it's not always easy and I have made many mistakes.

I find it interesting that we (speaking for the group at large,) recognized the wisdom of Jack and Al. I am glad that their quotes and replies are still here to serve us. I really appreciate Jack's words as posted above, as my own thoughts truly mirror such sentiments.

I too have witnessed a prolonged and debilitating illness that led far too slowly to my father's recent death. That experience taught me that I do have choices I can make in advance regarding my own eventuality. Things get complicated when illness involves a loved one, such as in my case. I love my daughter, and find it hard to step back and let her take the reins in controlling this disease. But, I am doing the slow release knowing that she is an adult now. She is capable, and proving to be very strong.

gwenllian111
09-15-2012, 04:35 AM
What a thread this is. It's the first time i've read Jack's post and this thread. Inspirational. :/

I always thought I could accept my death, but now that I have children and a husband, it terrifies me. It's not the process of dying, it's the people i'll leave behind. Awful death anxiety. :(

drz
09-15-2012, 11:51 AM
What a thread this is. It's the first time i've read Jack's post and this thread. Inspirational. :/

I always thought I could accept my death, but now that I have children and a husband, it terrifies me. It's not the process of dying, it's the people i'll leave behind. Awful death anxiety. :(

Glad you found it and enjoyed their wisdom.

jola57
09-16-2012, 05:52 PM
Jack, I miss him still and Al. Since getting wegeners in 2006, I have lost 6 healthy friends to stroke, heart and cancer. One of my good and oldest friends is struggling with breast cancer which spread to her bones, yet here I am. While all these lovely people were enjoying their healthy lives, I was struggling with pain, chemo and pred, yet here I am. I have been somewhat in remission in the past few months and feeling good. Is this not life's little irony?
Gwen, is this the picture of the little one we know from birth?

Sangye
09-17-2012, 06:27 AM
A couple years ago a friend who was the epitome of health and strength was out cutting down trees with his father. One of the trees landed on him and killed him. Before that, if anyone had asked our common friends which one of us would be more likely to die sooner they would have voted for me hands down. I would, too. Everyone says things like "No one ever knows when you'll die" but those of us who live like this are probably the only ones who really believe it.

me2
09-17-2012, 07:38 AM
I too would have been voted off this 'island' a long time ago due to illness and seemingly endless rounds and types of treatment. A couple years ago my brother , who had virtually never been sick, got cancer and was gone within a few months. I still can't believe it. Who stays and who goes is a very deep mystery. When I go, I hope to look into that. If I can find Al or Jack they will probably have the answer for me.