What I have learned from having Wegener's granulomatosis?

[pberggren1]

Ya ya ya! You said that already.

[delorisdoe]

shush now phil, is it not raining out west. you could give it a try right now. well in this part of the country anyway.

leigh

[drz]

for Alysia here is an old thread on this topic and some posts might be of interest to you.

Hi pete & Michelle,
this can be the beginning of a new list:
"what have I earned from having WG":
my first point in that list is, of course:
membership in this forum.

[Alysia]

for Alysia here is an old thread on this topic and some posts might be of interest to you.

Hi pete & Michelle,
this can be the beginning of a new list:
"what have I earned from having WG":
my first point in that list is, of course:
membership in this forum.

Hi drz,
thank you very much for finding this thread. It is so touching and full of wisdom. a lot of things to think about.

[drz]

I have learned to be grateful, that help and compassion are all around me.
I have learned to slow down (okay, that may be a bit of a lie) lets say I am learning to slow down.
I have learned that most people will be kind and compassionate if you give them the opportunity to be that way.
I have learned that some people just aren't kind and compassionate and it is what is and I don't need to "fix" them.
I have learned that when I think my friends and kids don't "get it" it is usually my own pity party and when I let them back in they do "get it".
I have learned that the universe gives me what I need and I should not worry about the future so much.
I have learned that death is not scary, just part of the journey.
I have learned that I value the people in this group way more than I could have imagined.

I miss her wisdom and compassion. It is nice and reassuring to read her second to last line. Her journey is now complete!

[Alysia]

I miss her wisdom and compassion. It is nice and reassuring to read her second to last line. Her journey is now complete!

Dear drz,
Im so sorry for your loss
she sounds amazing. I wish I could have know her, and others here that "completed" their journey".
it is so sad.

[Debbie C]

I like to think that they ( Al, Jack,Lightwarrior ) may have ended this journey but they are on another journey ...far better than this one.

[Wegetarian]

I guess I'm way more shallow than most people here, but I really learned to like video on demand. When I was three weeks in bed I must have watched at least 60 hours of TV-series from my laptop. Granted I'd much rather went to the beach or drank beer with my friends, but I guess you just have to do what you can and makes you feel a bit better and not worry too much about the things that are out of bounds.

I've heard before that getting diagnosed and receiving working medication is a wonderful feeling. Didn't really have experience of that prior to Weg. But having my nose open up and fever gone was such a marvellous feeling so I understand that a lot better now.

I'm kind of surprised I'm not freaked out about getting this disease, perhaps it hasn't settled in yet or maybe its because I've had so many surprises hit me this year already that it didn't shock me too much. I kind of consider it at just very bad luck that I got it, and the only thing I can do is try to be active in how I get it treated and how I treat myself.

I've been amazed how well our health care system has worked for me, and how I feel the doctors are doing a wonderful job in helping me. I never expected to be treated so well, but do understand this is probably also due to luck. I mean I'd imagine most doctors have never even met a Weg patient so getting diagnosed so early and getting prednisolon and an appointment for a specialist is of course extremely lucky for me. Reading other stories I understand this is far from a certainty. To my knowledge I should be financially secure for quite a while, and the treatments should cost next to nothing for me - so I don't need to stress that either for now. Never expected to be amazed by our public health care since my earlier experiences weren't particularly positive.

I do hate how this disease affects my family. Especially my son has been reacting a lot when I've stayed at the hospital, and I haven't had the energy to give my children the time they would need with me. I hope this has already changed for the better but its always something I should focus on more. I mean I do need to consider what is important, and make a difference for the people I love.

[Mikek]

I've learned that life ain't fair! My misses don't deserve anything bad, after all- putting up with me is more than enough trouble.

[drz]

I have become very aware of death and learned that it is something everyone should build into their picture of what life is all about. Most people seem to think that they will live for ever, but I now realise that none of us do.

I'm not morbid about this and neither do I dwell on the thought, but it is now there in the background and has become part of my life.

I miss Jack and his calm reassuring manner.