Questions,questions???

[Mikek]

Jenny was diagnosed yesterday and today we are wondering how this will affect our lives. Would it help Jenny if we moved to a warmer part of Australia? Will we still be able to take a cruise , fly to New York, wander around Europe on the railways or are our travelling days finished?
Are there foods that will help or hinder her progress? Should she avoid alcohol? Stress? Will antihistamine tablets help her until she get a specific medicine? Is there any prospect of a full recovery? We worked and saved for retirement which to us means travelling-what now?

[pberggren1]

Some with Wegs never attain remission. Some with Wegs have remissions for 40 plus years. Most with Wegs do fairly well. Just take one day at a time.

[Dirty Don]

Mmm, don't know about travel...my pulmy once stated that though I am in remission I need to be careful of infectious situations, but he also pointed out that once my immune system is back online and under control, I can do whatever anyone else does...the body gets sick, those of us with WG just need to be more careful, but not paranoid. There may be foods that assist staying healthy and help control susceptibility to infections. Antihistamines don't really do a lot for sinus WG damage...very temporary. There's always a prospect of recovery, though, at this time, it will never be a full recovery as there are no cures for WG...let's hope someday. I'm in med remission with suggestions recently by my docs that I could achieve full non med remission by end of next year...but that's distant & I'm only 2 years down the road (age 64) from my first full flare...we'll see. Best to you, try to reduce the stress, don't put this on yourself or Jenny...it is what it is and the best way to deal with it is what Phil suggests...one day at a time. It will be a while, but you will get thru this and on to what you expect out of your life. Best to you.

[Mikek]

Thanks so much for those helpful replies.

[mishb]

Hi Mikek and welcome to the forum.
What part of Australia are you from?

When I was first diagnosed I had already paid for a holiday to Fiji. My ENT and GP advised me to still go because the heat and humidity would do me good.
........well, it did nothing. No change what so ever. Was still a lovely holiday none the less.
If you look at the weggie map, you will see people from all over the world......some in hot climates and some in very cold. This WG disease is not picky or fussy on the weather and likes to get people wherever they are.

In December 2012 I travelled to the USA and had a wonderful time.......I wore a surgical mask on the plane and no-one around cared. I felt really silly, but it helped protect me from the germs that travel throughout the plane.......in fact, three of the people I travelled with got the flu......but not this little weggie.

There really is no reason why Jenny can't travel but precautions are a must. It is also an idea to check out where the nearest hospital or WG specialist can be found, where ever you travel too.
Marta, on here, travelled to China not long ago and our Chief (Andrew) is currently enjoying a well earned trip to Europe.

Since I got ill in 2009, I am now allergic to so many foods.......maybe not allergic, but they do cause excessive joint pain, if eaten....citric type foods is a big no no for me.
Alcohol should also be avoided or kept to a minimum, at the least.

An antihistamine never worked for me or the antibiotics or medicated nasal sprays. What did work, to a mild degree, was Aspro Clear......and until I was properly diagnosed and on the right treatment, I'm sad to say, that I lived off Aspro clear.

Take care of Jenny, and yourself and you will both be able to travel and enjoy your retirement......maybe at a slower pace than you are normally used to.

[Mikek]

Thanks Michelle, we were advised to avoid aspro.

[Mikek]

Your information regarding travel is very encouraging. We love cruising in fact on this day last year we were sailing out of Venice. Wonder we'll get to see it again

[mishb]

Thanks Michelle, we were advised to avoid aspro.

Yes, as I said, I wasn't properly diagnosed yet. I actually had a few vein bleeds (unknown bruising) during this time, which was caused by the aspro.
When I was diagnosed I was also told to avoid aspro.......but only after I started pred.
I think one a day is the limit now, and I do still have one (only) occasionally, if headaches or nose pain gets too much.

I also found cold packs to help quite a bit and hot packs, not so much.

I hope Jenny was told to use some sinus saline washes - they really help.

[Mikek]

When does it start to improve?

[Mikek]

I've never previously had to consider a health problem that had no cure. This is a new situation for me requiring some new thinking. The old girl is looking pretty crook today, I've usually been able to suggest a medicine or take her to the doctors. There's also the selfish thought that I might lose her to this. All somewhat puzzling.