News of Jack

[elephant]

Jack, I wish I could find that answer for you too! Keep your wonderful attitude going!

[Sangye]

I don't really have good days. My best days are just less awful than the others. Man, I'm sick of this.

[Geoff]

Oh Sangye, please take this big hug with tons of love,

[eileenv]

Welldone Jack for taking those sreps unaided, sorry to hear Sangye that you don't have many good days, this disease certainly takes it's toll on people. More hugs coming your way

[Hammy8241]

Keep at it Jack, get the wife to keep moving the tv 'zapper' out of reach.... it will soon come.

[Jack]

Keep at it Jack, get the wife to keep moving the tv 'zapper' out of reach.... it will soon come.

I went for the walk because my crutches had been tidied away in the next room!

Sangye - I class a good day as being one when I don't feel sick or ill, general pain levels are minor and I can walk using crutches with tolerable pain levels. I suppose that most people would class themselves as being pretty poorly if they were in a similar state, but it is all relative. What are your main problems at the moment? Is it still the Edema? I so wish you could find some way of relieving it. I wonder why it does not respond to treatment?

[elephant]

Sangye is could be the sleep apnea that you mentioned that is causing the edema, and that can contribute to feeling worn out....I know you know all this.

[marta]

Sangye - I class a good day as being one when I don't feel sick or ill, general pain levels are minor and I can walk using crutches with tolerable pain levels. I suppose that most people would class themselves as being pretty poorly if they were in a similar state, but it is all relative. What are your main problems at the moment? Is it still the Edema? I so wish you could find some way of relieving it. I wonder why it does not respond to treatment?

Jack and Sangye, it is all relative, but it doesn't make it OK. I feel like quite a whiney little baby compared to you guys. Yet you still manage to help me and others out everyday despite feeling so awful. I have no idea what to say other than I think about you lots and hope/pray/wish/will that someday (like NOW would be great) something miraculous happens that makes all this pain and suffereing go away for you.

[Brooke]

Jack, happy to hear you were able to walk without your crutches! I bet that felt like a great accomplishment! Sorry, i can't remember Jack - do you also have joint involvment? Or is your weakness/soreness due to all of the medication?
Sangye, I hope you reach it to having good days, not just feeling less awful than the previous. When did all of this start? Meaning the feeling awful or less awful?

[Jack]

I've been losing weight and suffering lower leg pain for around five years, but I was still able to get about although I had to give up work. I've had every test in the book and seen all the various departments, but no one can pin it down exactly. There are so many people on the forum with similar pain that I think it is another aspect of Wegener's. Falling down the stairs earlier in the year and breaking everything really knocked me back a long way and I'm still trying to recover from that. The sickness / illness feelings are mainly related to the condition of my digestive system which seems to have suffered due to 25 years of pill taking.