What I have learned from having Wegener's granulomatosis?

[drz]

I have learned that one doesn't really need that many clothes. Very few of my pre-PREGNANTZONE CLOTHES fit anymore but one can get by with very few, especially when you don't work or go out much any more due to illness and poor health.

[pberggren1]

I've learnded who my true friends are. The ones that are true, 3 of them, have stuck by me since the beginning. They don't really totally understand the disease and what I go through but at least we all keep in touch and they show compassion.

[Lightwarrior]

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.

[Geoff]

I have learnt that every day, rain or shine, is a gift, thats why its called the present.

I have also gained X-Ray vision, in so far as I can see through the clutter of life's so called adornments, to what is really important and valuable.

I have also learnt that its better to smile, and see it reflected in complete strangers faces than to frown and wallow in self pity.

I have just returned from Australia and my Dad's funeral where I found that Life is really what you make it. He was given the last rites in WW2, he beat cancer twice and survived numerous heart attacks over the past 39 years.

His funeral was a celebration of his life and a testimony to the love between my Mum and Dad, married for 65 years. Spread a little Love and Smile.

[Cindy]

I've learned that you can turn a difficult experience into an opportunity for tremendous growth, but it takes a lot of determination, courage and self-honesty to do it.

I've learned to take care of my own emotional needs instead of expecting others to do it. It doesn't matter if someone else "gets" what I'm going through. I'm the one who needs to get it and feel compassion for myself. This is a big one for me--couldn't have done it without a lot of therapy!

[elsawind]

My husband probably will say " I should of work less and play more".
I agree with everything that was already said.
I do not have WG but I suffer by my husband's side every single day. We give thanks every morning when he is able to get up with not much pain.
We learned to expect anything at any moment and at the same time not to expect much.
We learned no to say, I'm feeling much better today, because almost everytime he is worse the next day.
We learned to be greatful when he gets a nurse that draws blood without pain and uses the elastic band instead of a tape. Now he carries the band for the just in case.
We enjoy every word the grandchildren say, every e-mail sending "energy" to grandpa, every sunrise, the ocean, nature itself.
We learned to pay more attention to details, to be more compasionate.
But we could of learn the samethings without WG!! I'm a very healthy breast cancer survivor on my 10th year and I learned all those things back then!
We live a healthy life, so I learned too that it really does not matter, maybe it is all written, maybe it is our destiny.
We learned to take it in the way it comes and try to make the best out of the time we have.
I personally learned how to hide my sorrow and my tears and be always smiling faking how happy I am. I just break down when our girls comment on how unfair life is, so they do not talk about it anymore, they are my rock of Gibraltar.

[gwenllian111]

Certainly the near death experience taught me again or reminded me of my is important in life, and it isn't how many toys you have, or what's in the garage, or how you dress or any of those things like that.

]

This really strikes a cord with me. When I was 14 years old, I had two near death experiences while I was in Intensive Care, and HDU. I remember clearly walking away from hospital thinking 'whatever happens, don't ever fear death. There is nothing to fear.'

The thing that upset me most was seeing my parents cry, and my mother, who was too distraught to see me suffer, as she paced the corridors outside in tears. It was those who I thought I would leave behind which broke my heart. And now having children, that weighs even more on my mind. I have written a will now, to ensure that my wishes have been expressed and that those closest to me are protected, to the best of my ability.

I have learnt so so much from my experiences. In a way, I am thankful to WG for them. I have met some wonderful people along the way, and I truly am grateful for what I have. Same as Sangye, I may have to come back many times to answer this questions fully.
xx

[drz]

I am really impressed with the wisdom expressed in many of these posts and want to thank those who shared them. I have learned a lot from reading them and find it helpful to go back and re-read them. There are some really great people here and learning about them qualifies as another positive for me from having Wegener's disease because if I didn't have the horrible disease I most likely wouldn't be here.

I read elsewhere about what a person learned from Wegs or similar disease and it was humility. Another person said they learned not to be so cocky and self sufficient. The disease and loss of ability taught them how to accept help from others. If one prides themself on being self sufficient, this would be a big change. Learning to accept help gracefully can be a difficult thing, but it also helps one learn to appreciate the kindness of others

[freakyschizogirl]

As a late comer to this thread just wanted to add my lesson learned. And this would be be careful what you wish for. Many years ago as a kid a conversation was started between a group of girls about what they would change about themselves or have surgery to correct. I said my nose, because even then i had saddle nose and i just thought it was fat and ugly. Well i'm eventually gonna get that surgery and now its the last thing i would change about myself!

There are some really great people here and learning about them qualifies as another positive for me from having Wegener's disease because if I didn't have the horrible disease I most likely wouldn't be here.

Couldnt agree more drz.

[Happy Camper]

Life is not about waiting for the strom to pass, its about learning to dance in the rain!