Worst things about having Wegener's granulomatosis

[alhartzler]

Wegener's is a devastating, insidious, life-sucking, progressive disease. But, there is comfort in knowing there are others out there, who have feelings of heartache, despair, and doubt. While this is a tough thread, there is still hope, and humor. I laugh out loud at some of the posts! So funny, so sad, so familiar! My best wishes to all my fellow weggies and their families.

[Hammy8241]

77. Forgetti ............now what was it i was going to say?
78. The instant welling up of anxiety and the inability to take the slightest pressure.

[renidrag]

79. Looking for other "little things" to do to convey my love for my wife. She has to do what I used to do.
80. Allowing yourself to be humble, because you know you just "can't"

[Sangye]

Wegener's is a devastating, insidious, life-sucking, progressive disease. But, there is comfort in knowing there are others out there, who have feelings of heartache, despair, and doubt. While this is a tough thread, there is still hope, and humor. I laugh out loud at some of the posts! So funny, so sad, so familiar! My best wishes to all my fellow weggies and their families.

Angela, I just want to clarify that Wegs is not a progressive disease. If it's untreated it certainly can be, but if treated or in remission it does not progress. An example of a progressive disease is ALS/ Lou Gehrig's disease. So-- there's one LESS thing on your list!

[LisaMarie]

I am enjoying this thread....i am laughing and crying...it great!!!!

[Daggar]

Watching your son suffer and praying to God that he will have a normal life.

I hear you loud and clear Jeri...... just to add to that...

Feeding your kid the drugs knowing full well the potential dangers involved with them and coming to terms with the fact there wasn't an option.

Kind of that "pay the piper now.... or later"..... it was a horrible feeling.

[Jack]

The first five years were pretty rough, but since then Wegener's has not caused me too much trouble, instead it has been the drugs that have been slowly killing me. Without them I would not be here, otherwise, for me, the medication's side effects are the worst thing about having Wegener's.

[Daggar]

Jack -- I recall reading one of you older posts where you said the treatments didn't include all the precautions that they follow today -- did you mean they didn't use the secondary meds like sulfatrim/bactrim, ranitidine/omeprazole, folic acid, calcium/vitamin D supplements, etc.? Did they at least tell patients to consume a "lot" of water?

[Jack]

Compared to the treatment people seem to be receiving today, I would say that I was probably over medicated. However, I was in a very poor state (unable to stand and kidneys past the point of no return) so perhaps it was justified. I was told to drink plenty of water, but not the reason why and I would have made more effort if I had known. Calcium, Bactrim and protection for my digestive system were only added as the need became apparent. Given the chance, I would have donated sperm, but the possibility of problems was only mentioned in passing.

On the whole, I have no complaints and feel that I had the best treatment available at the time, but there is now more information available if you ask the right doctors and a slightly better choice of drugs. We are still stuck with the Pred though!

[LisaMarie]

prednisone prednisone go away......and don t come back another day....i can dream can t i....down to 20mg...wish me luck...
JackI think I am addicted to the crunch bar....good thing they are hard to find...lol...
I hate the fact they everyone reacts differently to treatment....we can share experiences but none of use seem to be alike...in treatment or symptoms....WG IS A BAD THING ANY WAY WE LOOK AT IT,BUT EVERYTHING HAPPENS FOR A REASON ATLEAST THAT IS WHAT I TELL MY SELF WHEN I HAVING ONE OF MY ."MAD AT THE WORLD DAYS".... ...Thank God today is noy one of them