what to look forward too

[jennerik923]

Hi- just wondering if anyone could give any insight into what we could expect from now on... is there a diet we should follow? any physical exercise that should be done? any do and donts as caretakers and any dos and donts for Erik- would be greatly appreciated. Like i said previously, we are going blindy into this as most of you did so we are looking to you for any advice and any insight is greatly appreciated.

hope you all feel healthy soon

[elephant]

I asked my Wegs Specialist if there was a special diet that would help the wegener and she said no. For exercise do what you can. Walking is the natural and easy execise to start with, but always ask your doctor.

[vdub]

Like L, I've never been told of any diets other than "lose weight" (yeah, right). I don't think there are in holistic cures/issues with wg, but sangye can better answer that. And, as L says, do what you can. Personally, I have found walking to be very comforting and relaxing. I actually love to walk where as for the past 30 years I was a runner. Now it's walking. I often take the long route to get from point b to point a. I walk at a comfortable speed and don't try to break any land speed records. Just relaxing walking -- maybe a couple of miles a day interspersed with a sit down and an ice cream cone..... :-) I can spend hours and hours in malls and museums jsut walking around and "getting educated". Mabye it's good for the mind.....

[Jack]

I think that all you can do is to eat sensibly and try to keep weight under control. I'm afraid there are no miracle foods, but I know that Sangye may well advise that some supplements are added to the diet.

[Hammy8241]

I concur with Jack. Exercise as you feel you can but don't push it. But with regards to Wg, expect a roller coaster of highs and lows, try to remain positive and never be afraid to ask questions of your Drs or us.

Jam Roly Poly is a must for 'low' days, preferably with Custard or cream. :drool:

[mishb]

Jam Roly Poly is a must for 'low' days, preferably with Custard or cream. :drool:

Yum, haven't had that for years.
My husband just said, "you beauty, I can feel a lot of 'low' days coming on" :thumbsup:
hehe

Thankyou Hammy for some great memories

[freakyschizogirl]

I concur with Jack. Exercise as you feel you can but don't push it. But with regards to Wg, expect a roller coaster of highs and lows, try to remain positive and never be afraid to ask questions of your Drs or us.

Jam Roly Poly is a must for 'low' days, preferably with Custard or cream. :drool:

Oh Hammy, i wish i'd never suggested tempting foods as avatars! That looks soooooooo SOOOOOOOO scrummy!!

[Sangye]

I'll probably be sorry I asked, but what on earth is Jam Roly Poly?

Jennerik, I echo what has been said above regarding exercise. An anti-inflammatory diet is helpful, despite the fact that most MDs poo-poo it. Not sure why they do since it's basic biochemistry. You can google it and find lots of resources. Personally I follow an Ayurvedic diet and incorporate some aspects of an anti-inflammatory diet along with anti-inflammatory supplements. I know for a fact this lowers my pain levels and certain Wegs symptoms, allowing me to be down to 2.5 mg pred.

As far as supplements, you can find my posts in these threads for specific info on which are safe and which should be avoided.
http://www.wegeners-granulomatosis.com/forum/new-member-introductions/346-my-roommate-i-2.html
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/353-natural-homeopathic-remedies.html

[Hammy8241]

Sangye, nothing to worry about.....except your waistine:biggrin1:

Recipe for Jam Roly Poly - It Doesn't Get More English Than This,People - Simply The Nest Blog - English Girl Blogging About House Renovation, DIY, Recipes, Inspirational Interiors, Design & Life in a Manchester Nest (http://www.simplythenest.com/journal/2009/11/17/recipe-for-jam-roly-poly-it-doesnt-get-more-english-than-thi.html)

Now Spotted Dick.............................................. .........!

[Sangye]

Jennerik, we always like to present all sides of an issue when possible, so our friend Hammy is providing excellent tips on what NOT to do. Ahem. :wink1:

[Hammy8241]

I'm hurt Sangye:sad:.
I'm still alive so it must be working:thumbup::thumbup:

[jmmilliorn]

Hi- just wondering if anyone could give any insight into what we could expect from now on... is there a diet we should follow? any physical exercise that should be done? any do and donts as caretakers and any dos and donts for Erik- would be greatly appreciated. Like i said previously, we are going blindy into this as most of you did so we are looking to you for any advice and any insight is greatly appreciated.

hope you all feel healthy soon

Best wishes to you on your WG journey. You will benefit from reading as many of the posts as you can. You will begin to get an overview of the disease and what to expect. Some of the Weggies may have more severe cases than you, and some may have fewer symptoms. One thing we all learn is that Wg is different for everyone to some degree, but there are similarities and there is a lot of good information. For me, finding out that others were experiencing the same symptoms and feelings made me feel less alone out there. I didn't know if I what I was experiencing was normal for the disease or not, just side effects of the medicine or totally unrelated altogether. Sometimes it isn't easy to tell. You can post or email anytime if you have questions.

[Sangye]

I'm hurt Sangye:sad:.

Are you kidding or serious? I would never want to hurt you, Hammy.

[vdub]

Some of the Weggies may have more severe cases than you, and some may have fewer symptoms. One thing we all learn is that Wg is different for everyone to some degree, but there are similarities and there is a lot of good information. For me, finding out that others were experiencing the same symptoms and feelings made me feel less alone out there. I didn't know if I what I was experiencing was normal for the disease or not, just side effects of the medicine or totally unrelated altogether. Sometimes it isn't easy to tell.
Both of Mike's points are absolutely true....

[Hammy8241]

Are you kidding or serious? I would never want to hurt you, Hammy.

Kidding sangye, like you i'd never deleberatly hurt anyone on here - even with pred rage!

Sorry if I worried you. :hug1:

[Sangye]

Okay, whew! When I'm really sick my joke detectors can dysfunction. :biggrin1:

[pberggren1]

Okay, whew! When I'm really sick my joke detectors can dysfunction. :biggrin1:

When I'm on pred my joke detectors go haywire! :predrage::w00t::scared:

[Lightwarrior]

Okay, whew! When I'm really sick my joke detectors can dysfunction. :biggrin1:

Mine too Batman, I don't understand why everyone doesn't think I'm funny.

[jennerik923]

thank you for making me laugh.. sad thing is a know what spotted dick is...the food that is...:flapper::flapper:.. Erik unfortunately has already had a bout of the pred rage- but mostly aims it towards his sister and mother =(- easy targets I guess... Chemo txt plan was successful- two wks from now another 3 days of treatment and then we shall see. Do any of you know if there is a WG research fund. We want to have a walk to raise some money but dont know if there is any fund and i havent come across any in my research... tks again:smile1:

[Sangye]

What a great idea! The Vasculitis Foundation funds a lot of Wegs research and is non-profit. They will also help advertise your event via their newsletter and website.