What is YOUR biggest trial with wegeners ?

[lag713]

My greatest challenges have been fatigue and stress (related to having the diagnosis and what it might mean in the future).

It's hard to make decisions that go against what you want but are best for your health. I decided not to travel across the globe on a family vacation to visit my brother because I knew the trip would be too hard on me. I developed asthma and migraines shortly after diagnosis and I knew the trip would be difficult to enjoy with asthma (out of breath with moderate activity) and trigger my migraines (need to go to a dark, quiet place for hours if not the rest of the day). I feel like I missed out but I know it was the right thing to do. I would have felt so guilty for spending so much money being there and being unable to enjoy it.

[Pierre42]

For me the hardest part of WG has been surfing the fringe of hypochondria. (I'm not "fine", I'm just asymptomatic)

Learning what is normal and what is "emergency ward worthy", learning to listen to what my biology is telling me.

It's the little things in life: early to bed, early to rise, stops the WG from screwing up our lives ....

Getting used to having a conversation which starts with "I caught the flu or something" and ends with "and it took 5 days in hospital with three different IV antibiotics, simultaneously - doctors with _really_ worried looks on their faces on the third day..."

... only last week a work colleague asked me how my weekend was: to which I replied "I got sick but I didn't end up needing to go to hospital - so it was a good weekend". (colleague spends the next 5 minutes popping their eyes back in)

[vdub]

Ah, Pierre, you really nailed it! I would usually quote one or two particularly good parts from a message, but your entire message, each paragraph is right on target. Those are issues I have had, too, but never quite expressed them in words.

I really like the first paragraph "surfing the fringes of hypochondria". No kidding! Every bump, every pain, every cough, sneeze, or wheeze is immediately a concern.

Very Good!!