What I have learned from having Wegener's granulomatosis?

Not a dam thing except it sucks!:ohmy::mad:

OK, that's my first reaction. Well, maybe there are some lessons to be learned if I dig deeper.

One cannot be diagnosed with a chronic and rare disorder without it having some effect upon you.

Certainly the near death experience taught me again or reminded me of what 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.

When I thought I was going to die, it seemed like an easy thing to do and not something very scary or frightening at all so death is not something to fear.

It brought people back into my life that I have not seen or heard from in years. People and the relationships are what matters in life.

I don't sweat the small things as much and most things are small things once you can breath. Being able to walk is also a big plus in life as is the ability to dress oneself and toilet oneself.

Modesty is overrated when you are a patient. You are just an object to medical staff with medical and personal needs and anything they are doing to your body they have done hundreds of times so relax and let them do their job.

Some thank you's and appreciation go a long way in making your care go easier.

It helps to share your feelings and worries with staff but whining and bitching seldom improve things. A request for help goes a long, long way.

Most staff care and want to help you and that is why they went into their line of work.

Deal with today cause "Most of the stuff people worry about, ain't never gonna happen anyway.”

OK, your turn! What have you learned?

I've learned so much I might have to come back a number of times to answer.

I've learned to be more compassionate towards others, whether they're sick or not. As "invisible" as Wegs is, I see that everyone suffers, in ways that are not always visible to me.

I'm learning how to surrender in all the places I would not bend. Losing my excellent health, my practice and having to take drugs I thought I'd never put in my body, etc.... This has deeply changed me and I'm working to let go more and more of anything I cling to.

I've learned a lot about impermanence.

I've learned to be grateful for all the things I used to take for granted. The simplest thing is the world to take advantage of is your health, and unfortunately you don't realize that until it's gone or compromised.

I agree with the above statement, I've learned to be more compassionate to others. You never know what kind of battle someone else is waging.

I also have learned that family and friends are really all that matters in life, nothing else is nearly as important. And since diagnosis, I have made a point to make time for the people who matter in my life. It is one of the few blessings in disguise that Wegs brings :)

I have learned that when I can't control things like WG, I can control my mind and through that I can find peace and happiness.

I have learned that when I was so sick that I was bedridden, there were so many around me that were just waiting to pick me up!

I have learned on this forum that I really am not the only person with WG.

I have learned that when I have to spend a day in bed because I'm just too sick to face the day, I tell myself "it's OK" - it's just a TV catchup day.

I have learned that bad things do happen to good people.

Be back for more . . . . .

I have learned that when you are down and out you find out how important your family and friends really are!

I have learned not to take the things for granted and to enjoy the little things in life.

I have learned that life really to short! Make every day count and tell those people who are special in life how much they mean to you!

Great post drz it was like you where reading my mind! Especially on the Modesty thing it kind of does go out the window! Can't wait to see other post!

I'm learning to be more patient with others. Most people don't realize how difficult my days are, and I have to assume that many people are having an equally difficult time even if it's not about their health.

I've learned that I used to think I was entitled to good health because I ate right, exercised lots and took good care of myself.

I'm learning to get more comfortable with uncertainty.

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.

Me too. It's very useful to be aware of death. Thinking of my own motivates me to use my life better, and thinking of others' helps me to have compassion.

I am flat out terrified of dying.

Try to look on it as an adventure. With all the medical care we are under it is unlikely that the actual event will be painful and there is nothing else to be frightened of.

Of course, there is no guarantee that we will die of a Wegener's related problem. Most "normal" people don't, but something gets them in the end! :wink1:

My daughter is an only child-thank for that cytoxan-and the idea of her being in this world without me scares the crap out of me.

I have learned that life is like a book. Every time I turn a page there may be words already written or it may be blank then I can write it for myself.

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Originally Posted by Cindy

I have learned that life is like a book. Every time I turn a page there may be words already written or it may be blank then I can write it for myself.

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I like this Cindy!

I do, too. :thumbsup:

I have thought about this a long time and I can't come up with a single positive thing I have learned.

I have however learned the following...
I am not as strong as I thought I was.
I am afraid of death
I am far too proud
And last but not least...I look terrible with chipmunk cheeks.:thumbup:

I am not feeling sorry for myself. Its more like wg knocked me down a notch lol

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Originally Posted by delorisdoe

I have thought about this a long time and I can't come up with a single positive thing I have learned.

I have however learned the following...
I am not as strong as I thought I was.
I am afraid of death
I am far too proud
And last but not least...I look terrible with chipmunk cheeks.:thumbup:

I am not feeling sorry for myself. Its more like wg knocked me down a notch lol

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Sounds like you have learned humility. :wink1:

I don't think anyone looks great in chipmunk cheeks, don't worry, you're not alone there:) But you are in good company!

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Originally Posted by Sangye

Sounds like you have learned humility. :wink1:

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I guess so. I like that. But I should also send a shout out to my mother-in-law who is also at least partly responsible for the above formentioned lessons in humility.

I have learned to appreciate the moment when I see something beautiful or interesting. I have learned to be thankful when I have a good (fun and enjoyable) experience for a couple hours.

Me too, drz. I always enjoyed life before, but now I really enjoy the times with friends and when I'm having a good time.

I learned today that my daughter is VERY capable and I can enjoy things and not worry about her all the time. She can take care of 'business' by herself. Very empowering for her and for me!

(RTX infusion today without me...and she survived! How did that happen!? Its because she is amazing, and coming into her own. I am so proud!) So very much to be thankful for....

Good news -- And she'll continue to surprise you...... it's the "letting go" part that is the toughest.

Kind of like when I let the wife drive -- she has to pry my bloodless fingers off the steering wheel!!:lol:

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Originally Posted by Palmyra

I learned today that my daughter is VERY capable and I can enjoy things and not worry about her all the time. She can take care of 'business' by herself. Very empowering for her and for me!

(RTX infusion today without me...and she survived! How did that happen!? Its because she is amazing, and coming into her own. I am so proud!) So very much to be thankful for....

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Palmyra, That is so great! And her power will continue to grow :)

You trained her well, Palmyra. Nice work, mama. :biggrin1:

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Originally Posted by Sangye

Me too, drz. I always enjoyed life before, but now I really enjoy the times with friends and when I'm having a good time.

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I wonder if we enjoy those moments more because they don't seem to happen as often.

That's certainly true for me! They are few and far between so I celebrate when they come around.

I don't know....chipmunk cheeks are kinda cute on some people. It's the MOON FACE that bugs me.:glare:
I've learned that there is someone worse off than I and try not to complain too much.
I've mentioned this before but I try not to think of this as "my disease" because I really don't want to own it.
I have more compassion and try to be more patient with those that may be slow .
I've learned to slow down myself .

1. That I'm not invincible. -I had no allergies, ever, and didn't even have a cold for years before I started to get sick.

2. That insurance is necessary. -See above.

3. That rheumatoidology may be a good field for me since I was searching for a passion. -I like medicine, am pre med, and looking for a change.

4. Life can be short. -Health may not mean happiness but bad health can mean misery. (Copyright for a fortune cookie)

5. Diagnosis feels good. -after 5+ months.

6. Some of the best ENTs here don't know of WG. -enough said.

I got one I got one....i have learned that 10 years latere I am just as confused by wg as I was then.

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! :biggrin1:

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.

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.

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 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. :smile1:

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Originally Posted by Sangye

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! :biggrin1:

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:thumbsup:

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.

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Originally Posted by drz

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.

]

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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

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

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!

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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.

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Couldnt agree more drz.

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

Ya ya ya! You said that already.

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

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.

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Originally Posted by 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.

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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.

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Originally Posted by 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.

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

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Originally Posted by drz

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

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Dear drz,
Im so sorry for your loss :hug2:
she sounds amazing. I wish I could have know her, and others here that "completed" their journey".
it is so sad.

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.

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.

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.

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Originally Posted by Jack

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.

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I miss Jack and his calm reassuring manner.

http://www.wegeners-granulomatosis.c...quote_icon.png Originally Posted by Lightwarrior http://www.wegeners-granulomatosis.c...post-right.png
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.

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Originally Posted by drz

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

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What wisdom Lightwarrior showed in her post. Amazing and impressive!

• I'm not afraid of dying
• the true meaning of fear (for me, at least)
• whatever happens, I need to know why (not "why me?" but "i want to understand, so explain it to me in all the gory detail - s'cuse me while I cough up a lung")
• doctors LOVE explaining the "why" (er, at least the good ones do)
• enough biology/physiology to astonish a medical professional
• the real-world application of "that which doth not kill thee maketh thyself stronger" (in oh so many ways)
• the flesh may be weak but the spirit is bloody-minded enough to do it anyway (often despite the doctor-or-nurses orders)
• bad drugs can be good, good drugs can be bad, all drugs are bad (except when they're the drugs keeping you above the daisies, but even then they're bad)
• listen to your body, it's trying to tell you something
• sisyphus had it easy

What a great subject! WG has such a wide ranging impact on sufferers. Pain, suffering and a complete change to ones outlook on life. It's definitely not all bad. :)

In the earlier days of my disease, it took about one and a half years before I accepted the idea that my life may be shortened. I actually felt good about death. My thoughts were that it meant I didn't have to worry so much about having to work into my 70s to ensure I have enough money to survive to the end of a natural life. What a great thought.

I remember saying to friends that now I know how my life is going to end. It takes away so much uncertainty.

The other single and pressingly urgent thought was that I only had one close friend in my life. I had many acquaintances but only one close friend. I decided to get in touch with all my friends and bring them together, introduce them all to each other and create a large group of friends for all to share for life. It took at least a year but it was a success. Now I would have trouble naming them all. What an incredible group of friends.

Ive heard it said that at the time of death if you have one close friend you have done well. Now my friends and I have many close friends. It's such a great feeling.

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Originally Posted by PJ2010

What a great subject! It's such a great feeling.

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Well then, when's your wake...sorry........neeeeeeed coffffffeeeeeeee!

Your invited mate but I'm sure they won't serve coffee!! :flapper:

Five years later I think i have also learned to live with more uncertainty and to be more flexible in my plans since they often need to be modified to accommodate "the spoons available to me". It is easier to accept what is when you give up your preconceived ideas about how things should be. As Popeye said, "Things is what they is, and I am what I am". So then i can relax more and enjoy the roller coaster ride of ups and downs.

all I can say is wow,,,,,, but I have learnt one thing,,, and that is how much I love my wife,,,,,, after everything I have put her through this last 12 months and she is still around and ready for more, even though we have no idea what the future holds or how long we could call the future.
during all this we also had the privilege of being blessed with a beautiful grandson, which makes me more determined to hang on as long as is possible, if the devil is about I am ready to sign contracts:w00t:

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Originally Posted by 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 himself 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

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Lots of wisdom in this thread by members who were active here years ago. Right now I am working on learning to enjoy the help others are offering me since my mobility is limited by my broken foot. I also learned that one can be happy and have fun times even when your life space is limited by your illness or health condition.

I hope your foot will soon heal!

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Originally Posted by drz

Lots of wisdom in this thread by members who were active here years ago. Right now I am working on learning to enjoy the help others are offering me since my mobility is limited by my broken foot. I also learned that one can be happy and have fun times even when your life space is limited by your illness or health condition.

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made me tears to read this thread.... my beautiful Dr. Phil is added to the list of those who are now in another journey, Like Deb wrote so beautiful above...
I have learned from wg about death. I am no longer afraid to die. one day, some other friends will read this thread and I will be among those who are making their journey at the other side... I feel peace about dying. maybe because I know that my sweetie will come to pick me up at the moment and that the reunion will be so joyful... we will spread butterflies and rainbows all over earth to let everyone knows how happy we are to be together. we will be in the presence of God.

(maybe I shouldn't write this. if someone find it not in place, please let me know and I will edit or delete. a moment of being sincere for me, but I don't want to hurt anyone by it. sorry if I did.)

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Originally Posted by drz

Right now I am working on learning to enjoy the help others are offering me since my mobility is limited by my broken foot. I also learned that one can be happy and have fun times even when your life space is limited by your illness or health condition.

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Might want to ask your doctor about the Exogen bone stimulator. If your insurance covers it, it might help a broken foot heal better. It did for mine!

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Originally Posted by MikeG-2012

Might want to ask your doctor about the Exogen bone stimulator. If your insurance covers it, it might help a broken foot heal better. It did for mine!

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i will get an x-ray in a few weeks and will ask about it then. I have three of the conditions that might warrant its use so if the break isn't healing well, I certainly will pursue it. Any thing to shorten the heal time would be a wish come true. Thanks.

Did you insurance cover it? Did your doctor say it was medically necessary? That is the criteria my secondary insurance uses. Medicare uses it own rules and is pretty conservative in what they allow coverage.

They say nothing lasts forever but I have learn in the year or so that wegeners is forever.

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Originally Posted by drz

Did you insurance cover it? Did your doctor say it was medically necessary? That is the criteria my secondary insurance uses. Medicare uses it own rules and is pretty conservative in what they allow coverage.

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Yes, medically necessary. If it didn't heal with the stimulator, the next step would have been pins bars, etc.--SURGERY!

Insurance paid for it, and I am glad for that. Had they not paid, I think I would have out of pocketed it, I was desperate to get back to semi-normal walking again. EBay has some older models...

I learned that a portable oxygen tank weighs 10lbs! I know because I weighed and my old back injury is haunting me, (a broken back ). I have learned that I try to concentrate on doing the right things where my Wegs is concerned, I'm side tracked by the fact that I am unable to be as mobile as I would like and due to the destruction to my lungs from the wegs! I have severe stage COPD as a result! I have learned that looking at life and living with in a box and I am/used to be able to go out side that box and had lots of room in that box of life. That box is so small now and I cannot go out of that box because I cant breathe, i.e., go when and where I please without restriction, working in my wood shop as much as I want to or just enjoying any recreation as I get to watch my family enjoy the adventures of the trails at the campgrounds or to play and rough house with my grandkids!
However, I recovered to a point from the L-3 compression fracture! I survived a bout with stage 4 cancer in 06, met up with diabeties in 08, lost my oldest sister two weeks after my dx to complications of diabeties! Suffered sinusitis from 2008 to 2009 when I finally had sinus surgery only to have relief for a week or 2! A month later. I lost 2 lobes of my in right lung in January of 2010, only to become sicker and in April 2010 I break out with purpura and I'm told its vasculitis and my treatment was pretty iffy at best because of the drugs I needed and because I had a cancer history, there was a lot of discussion about how to treat me! I learned that I was the topic of a call between up to 4 hospitals for the experts to devise the plan for me and it was cutting edge to treat my Wegs! It turns out it is the same treatments that everyone else gets but there was a fear that I could die from my treatments!
So here is what sums up about all that is going on in my life and that is that, When ever life throws me crap, I pick it up and throw it right back at life! I don't fear death and look forward to the day that I am called! From my cancer survival, to the lobectomy, the Drs just don't know why I'm am still going! I also have involvement in my kidneys but they are functioning at a lower capacity and the dr is not sure what I'm am doing but wants me to keep doing it, I have no idea, except I have that attitude and I approach everything with a positive attitude!
I am learning everyday as I bet about everyone here is also. Life is good if you can over look a few setbacks and work with what you have!

I detect a bit of depression along with reconciliation of the inevitable, Tom. I've been there -- actually, most of us have been there from time-to-time. Six months ago I was in the same state and for much of the same reason. My lungs have also gone to crap, but for different reasons. Seems my pherinic nerve is damaged and my diaphragm on the right side is paralyzed, which renders my right lung pretty much useless. I'm not yet to the O2 tank, but I couldn't sleep without the pressure from my bipap.

For me, things seem to go in about a 6 or 9 month cycle from crumby to good and back. I hope the same is true for you and that you are in the trough of a crumby cycle.

Hello vdub, I have found the o2 to be my new BFF. I tell my wife that she used to be the one I couldn't live out but I couldn't live with her either! I have told her that the backpack for my portable tank and her have a lot in common, "THEY'RE BOTH ALWAYS ON MY BACK"! Fact of the matter is, under the circumstances, I wouldn't trade either of them for all the tea in China!
I think you misunderstood my post! Part of it was what I have learned from the Wegs and other issues! The other parts of that were observations about myself!
I have my regrets that I wish things were different but they are not. I always accept the things I cant change and work to make the changes I can. When I fell and got injured, I remember not feeling my legs and lying on the cold ground before I passed out
I learned in 2000 while healing my back that there are others worse off than me and never to take things or life for granted. The acceptance of all I get to go through in life started with a trip for xrays at the hospital for follow up! I passed a young fella maybe 9 or 10 yrs old in the hall near the PT room. He was accompanied by a nurse, his mother and grandmother I assume!
he was wearing the same turtle shell I was for support but he also had support for his head I could walk and he was learning how to use a wheel chair that he was in!
I shuffled down the hallway with my walker and I stopped and looked one last time at that young boy! I'm not a praying person but I bowed my head and begged for god to put me in that chair and let that little boy grow to be a man. If I could have I would have willed him out of that chair myself and put myself in his place! I came home and told my wife about what I saw and felt and I didn't get it all out when I broke down fast and unexpectedly and told her that I will never be worse off then the other person! The sight of that little boy in that chair, and the lookin his families eyes will never leave me! And to this day and even now it brings tears to my eyes when I recount it to someone else! I think on that day, I was given a gift and if this is part of the gift then I will find the meaning of it and that is that I am considering body donation and maybe something can be gleaned from my Wegeners!
I make a lot of observations of myself and others and I'm am in tune with my body and listen to it!
I guess the good lord had other plans for me and I have taken them on so that maybe a little kid or family member wont have to! That's just my little bit of hope!
I have regrets but have learned that I can work through them! As you know with lung issues or at some point I'm sure you will, you will feel your lungs progressively getting worse! I have those times, I talk to my wife and I get a good cry for about 5 minutes and then I'm off to the next phase of the Wegeners, COPD diabetes or what ever it is and I face it with determination! I do complain some but not a lot of regrets other than where it concerns my grandkids that I want badly to see them grow and move into adulthood and be happy and healthy! At this point I pray for those things for them. I have accepted my out come of the present medical issues!
I am very content with life as it is but wish it could be different and that may be why you thought I might be depressed. I think that little boy in the chair did me more good than I wanted to do for him!
I know that someone else is always worse off than me and I learned at that point to try not to dwell on the bad! I also learn a lot from this forum and it is part of my well being because I can always find other who are dealing with this dreadful disease in different and worse ways than me!
The comment about Life throwing me crap and I just pick it up and throw it right back. If you are familiar with the Country song by Rodney Atkins, "If your going through hell keep on going, because you might get out before the devil even knows your there" ! I feel like I go through hell lots of times But I keep going! I was doing it this way before the song came out but it was the way that I roll!

Tom,
It has been a long time since you have been on here, it is good to hear from you. This Wegener's crap does teach us a whole lot, about ourselves and others. It seems like you are etching out a life with what you have to work with. I also have COPD, with the Wegener's and it does make it very hard to be as mobile as one would like, even if you are not on full time O2. You are so right about looking around to see others that have a lot more limitations, you don't have to look to far to see it.

Tom, try not to worry about the boy you saw.
When I was 17 I was told that I wouldn't be leaving hospital alive. I'm now 38 and still battling.
Having youth on your side gives you the best chance of survival and, hopefully, reversing damage.
I really feel for you having the O2 continuously. I've been using CPAP since the start of this year which I moan about and I only use it during the night.