Finally getting off Preds

[pberggren1]

It's always hard Rose. It took me a while to accept Wegs as well. Sometimes I go into denial and get depressed and then other times I fight back with a vengence.

[Sangye]

No, no Phil, it's not that I'm giving up or anything. It's just a natural response to dealing with the chronicity of Wegs. It affects me most when I'm trying to do something but am limited by weakness or other symptoms. My mind doesn't have Wegs and it wants to do something (eg. take a shower, walk a little faster, hang out with a friend to talk) but my body says "No." It's exacerbated by the fact that for 4 years the Wegs and its complications have been relentless. I often find myself saying out loud, "Oh, come ON!" Normal frustration.

[Rose Cozzette]

It's always hard Rose. It took me a while to accept Wegs as well. Sometimes I go into denial and get depressed and then other times I fight back with a vengence.

i guess thats what i do too, tho i feel sometimes like i'm spitting in the wind. everyone tells me how well i am doing but so much is different and less that it's hard to see where i really am. at least i can look in the mirror now, i wouldnt at first. i am not so angry as dismayed at this new me. and impatient.

[Rose Cozzette]

No, no Phil, it's not that I'm giving up or anything. It's just a natural response to dealing with the chronicity of Wegs. It affects me most when I'm trying to do something but am limited by weakness or other symptoms. My mind doesn't have Wegs and it wants to do something (eg. take a shower, walk a little faster, hang out with a friend to talk) but my body says "No." It's exacerbated by the fact that for 4 years the Wegs and its complications have been relentless. I often find myself saying out loud, "Oh, come ON!" Normal frustration.

you said it so well, that is how i feel. this has been the longest year of my life, even after my son died i saw hope because i believe the soul lives on. now i dont know what to feel abt this change.

[pberggren1]

That is good to hear Sangye. I know you are strong!!

[Doug]

Generally, I am a look ahead kind of person, but I adjust somewhat by looking back. I visualize the parts affected, and how damaged they were when I started this journey. Could I do thus and so in December 2003, the month my body finally crashed, on December 19th? How about a year ago? And so on. It helps me with perspective.

Yes, I would love to spend a whole day walking through Bessey National Forest on a lovely fall day, with my Nebraska Ornithologists' Union buddies. It won't happen this year, but I haven't put it off the agenda. One day, it may happen that I am able to join these friends in a limited way, enjoy the warmth of a fall day, the migrating warblers and vireos, the mountain and western and eastern bluebirds (Nebraska is right on the eastern edge of the range of some western birds, and the western edge of the range of some eastern birds: It is a cornucopia of birdy treats!)...!

I would be depressed, I think, if I focused on the what-I-can'ts right now, so I focus on things like I saw an American goldfinch harvesting thistle seeds in my backyard. They wait until the end of the summer to raise families because they feed their nestlings seeds, which, of course, mature at the end of summer. All other species, of course, have done their thing starting (here) in as early as February for the Great Horned Owl (they feed their nestlings pheasant, squirrel, grouse, so February is as good as any time, I guess!).

I got off on this thought, but you get the idea! Rephrase your circumstances: Last year I couldn't do thus and so, but this year I can do such and such. The changes may be small, but any progress is a victory over Wegener's granulomatosis! Cindy climbed Mount Everest. You may never climb THE Mount Everest, but you will metaphorically climb any number of "Mount Everests" in your healing process. Glory in each one, and work toward the next.

[Sangye]

Yeah, I do that. It's just the progress has been unbelievably slow and I've spent a fair amount of time actually going backwards. There were many things I could do a year ago or 2 years ago that are way beyond my reach right now.

[Doug]

The regressions help focus us on our dependence, really, on finding medical relief from the on-going business of WG in our lives. I don't take for granted that I always be in remission, nor do I do things (over-doing physical things, allowing myself to be stressed for long periods of time, etc.) I think might cause a flare- or, if i do, I kick my butt and fly straight until the next time! Your experience is one of the worst I can recall on this forum, if not the worst, because of your sensitivity to Prednisone and the botched treatment you got in Arizona. It's a small plus, but it is one of the things, your particular medical history, that gives you high credibility on this forum: You've been there and done just about all of that!

[Sangye]

You've been there and done just about all of that!

LOL when the vertigo and hearing loss hit 2 weeks ago, a friend asked "Is there any part of your body that hasn't been affected by Wegs or complications?" We actually went organ by organ, and no, there isn't! At one point or another, every single part of my body has had a noteable "issue." Most have resolved, though.

But hey, many Weggies have it WAY worse than me. Dr Seo has told me about some. It's bad out there.

[Doug]

Yeah, just locate one of those horror story worst possible case sites with photos of people with grangerous extremities and horrific pseudo tumors on the optic nerve, etc.! WG must have been too horrible to comprehend before they learned how to manage it.