Why I am grateful to have Wegener's

[Minneapolismark]

OK, I am not crazy, so I am not actually happy about Wegener's. On the other hand I have gained much by having it.

-- my lack of energy has forced me to empty my day of all but the most important things in life.
-- I married my beloved now rather than later.
-- I realized that I will not be defined by a disease or a demographic factor.
-- I have decided that I am not a victim
-- I have had to overcome my aversion to solitude
-- I have started taking much better care of myself
-- I have faced the possibility of my own mortality. You can't really live until you are prepared to die IMHO
-- I cherish the good in each day.
-- I have, in my solitude, fatigue and pain faced and come to peace with many old emotional wounds and hurts
-- I have found the courage to choose to live as fully as possible every day that I have
-- I have decided to hope and not despair
-- I have found that it is OK to have bad days, be afraid, get angry, be sad, despair, lose perspective

[Sangye]

I feel the same way. I've also learned that I can be grateful for Wegs in general but still be upset about the day-to-day suffering it causes me. I've had people tell me that if I were truly grateful I'd be smiling about it all the time. They usually get an earful from me. LOL

[Jack]

I just think it is crap. I'm sure I would not be a better or worse person if I did not have the disease, but I would be able to do stuff and not be in pain all the time. I'm sure I could work out some positives, but I don't feel the need. I don't go around depressed, I just accept my lot and get on with what little I can.

[elephant]

I am happy to be alive today and thankful that I can eat, breathe, talk, hear and walk. I do have a little envy and jealousy of others who can do more and live their life less limited.

[Minneapolismark]

I just think it is crap. I'm sure I would not be a better or worse person if I did not have the disease, but I would be able to do stuff and not be in pain all the time. I'm sure I could work out some positives, but I don't feel the need. I don't go around depressed, I just accept my lot and get on with what little I can.

Thanks for the candid response Jack! I really do appreciate it. For me this has been a spiritual experience in many ways. In many other ways it has been pure crap too.

I also think it is crap that I am fat and 52 years old, and have so far NOT found a spiritually redeeming value in either.

But yes, the whole thing is generaly crappy crap crap crap. Still... I have learned much from the experience. I've never had anything slow me down before. Honestly I have always been able to knuckle under and motor through anything and everything... until now. I wouldn't wish it on myself, but for me it has been worthwhile.

[Minneapolismark]

Hmmm.... not proud of this, but another advantage is that I can get seating in most restaurants immediately. I just tell them I have an incurable autoimmune disease. I started doing this to lighten things up for my three boys, because I didn't want them to see me defeated. I am transparent with them, and everyone. But I refuse to live in fear or defeat. I will never surrender to being "poor little old me."

Another benefit - I do less housework.

[Minneapolismark]

On the plus side I have a legal right to take narcotics.

On the negative side I need them.

[Sangye]

Mark, Wegs isn't "probably terminal." I tell people it can be life-threatening, which is true. I sure don't want to interfere with you getting fast seating in restaurants (especially since you're on pred!)--I'm just pointing this out to newbies who might not know.

[dunkie2202]

On the plus side I have a legal right to take narcotics.

On the negative side I need them.

Just out of curiosity what narcotics and why would you need to take/use them?????

[Palmyra]

On the plus side I have a legal right to take narcotics.

On the negative side I need them.

What a perspective! I would be bragging to all my old hippie friends, but then again, not really.