What have we learned about living with WG/GPA?

[Pete]

Amen to your thoughts, Randy. Living in the present is perhaps one of life's most difficult lessons. As an example, I read Spencer Johnson's "The Precious Present" about 30 years ago, but it took WG/GPA for me to even begin to take its lessons to heart.

[Il_Randyb]

Pete,

I hope nobody gets the impression I know how to live in the present, but I have certainly been forced to move in that direction. There was a time this year that I realized that I had essentially stopped dreaming, meaning I got to a point that I no longer thought about my retirement living in some scenic location in a log home, woodstove burning, etc........ I realized with the chronic kidney disease that many of my "dreams" were not very realistic so I had to stop. It felt like a real void when I stopped dreaming but in time I started to notice more of the here and now all around me and I dwell less and less in the future or past now. In my case before wegs I used to think mostly about the future, some about the past and a little bit about right now. Wegs has forced me to think less and less about the future, essentially not at all about the past and mostly about today and tomorrow so my window of awareness is pretty much in the immediate time around me now and I can feel myself feeling less aggitated, more comfortable with life, less in a hurry. All good things.

I will say that this is also bigger than just the wegs for me but I am working hard to learn how to really listen and become an empathetic listener which also can be a very enriching thing.

[Pete]

Randy,

I understand. I've experienced much of the same phenomena with respect to dreams of the future. Fortunately, my here and now is populated with two little grandkids who help keep me focused on what's happening now!!

[Dirty Don]

Aging...such a concept...at any rate or stage...sighs...

[Sjap0655]

Great Idea!! Thanks for sharing!

[drz]

There was an earlier thread on same topic about two years ago or so. I bet much of the things are the same but our perspectives do change over time.

[gilders]

What have we learnt?
Well compiling a list as you've done is very difficult - this condition effects people so very different it's almost impossible to give advice that is suitable for all Weggies. I believe that's why this forum is so valuable. There is no leaflet or website that can give definitive answers on what to expect from diagosis, what treatment you will receive, etc, etc. The best chance of getting answers is to ask on this forum, there's probably at least 1 weggie that has a similar "version" of WG as you personally have.

Having said that, there is always certain problems that all us weggies go through where your list is invaluable.

The main thing I've learnt is problems with work and being able to find a suitable job, with understanding employers. I've had this condition since I was 17 and held down jobs until I was about 29. Unfortunately one too many relapses led to my condition becoming too severe too work, plus I ended up with more conditions (renal failure, heart failure, haemochromatosis, among others).
The problem with work is that I truly believe that work is good for your health, but with WG I found full time extremely difficult. But I couldn't afford to work part-time (I have bills to pay). I believe the fact that I was constantly pushing my body beyond it's limits by working full time helped made relapses and a constant, slow deterioration in health inevitable.

[Alysia]

great list, Pete I hope that andrew can make it a "sticky" one.
my points to add:
* wallking everyday
* being in this awesome forum
* praying to God
(I hope I can say it without breaking any forum rules)