-
11-01-2011, 02:17 PM
#111
Originally Posted by
drz
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.
-
11-01-2011, 02:18 PM
#112
Oh Lightwarrior, how awful! Sending love and prayers your way.
-
11-01-2011, 02:27 PM
#113
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.
Last edited by drz; 11-02-2011 at 09:09 AM.
-
11-01-2011, 05:11 PM
#114
I'm so sorry to hear this Lightwarrior. I find it so hard to understand why another person would take another person's life.
Phil Berggren, dx 2003
-
Post Thanks / Like - 1 Likes
-
11-01-2011, 09:01 PM
#115
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.
-
Post Thanks / Like - 1 Likes
-
11-05-2011, 04:10 AM
#116
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
Originally Posted by
Widthofacircle
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
Want to see a miracle? Plant a word of love heartdeep in a person's life. Nuture it with a smile and a prayer and watch what happens...Never underestimate the power of the seed!
My mojo for today.....gonna be johnny apple seed and just keep planting
Lisa Marie
The happiness of people is not necessarily to have the best of everything...but make the most of what you have!!
-
11-05-2011, 07:55 AM
#117
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.
-
11-09-2011, 09:17 PM
#118
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.
Jolanta
-
11-10-2011, 04:41 AM
#119
Jolanta, that is exactly how I feel. You expressed it perfectly.
-
11-10-2011, 06:02 AM
#120
Thanks Jolanta your very articulate post framed the discussion for me
Bookmarks