Hi Weggies!
Im curious how many people who are exposed to daily ocean air have had severe sinus and lung involvement?
Evertime Im on the ocean it helps.
Tom
Sent from my SM-G925V using Tapatalk
Hi Weggies!
Im curious how many people who are exposed to daily ocean air have had severe sinus and lung involvement?
Evertime Im on the ocean it helps.
Tom
Sent from my SM-G925V using Tapatalk
Best wishes,
Tom
----------------------------------
2 years untreated. Dx w/ biopsy - 2000
Tx Plan:
NUTRITION
RESTORATIVE SLEEP
RAISE ANABOLISM
REDUCE ALL INT / EXT STRESSORS
I'm with you, Tom! A bad day at the beach beats a good day most everyplace else...
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
HI - I live on the coast surrounded by the Ocean and exposed to ocean air daily and am grateful that I live in such a wonderful place. . My lungs have been affected and have had sinus issues - although told no Granulomas found in sinuses although they were opacitified on MRI
I live about 30 min drive from the medditeranian. while the air is good for my breathing, the humidity and the wind are making my joints more painful. so rarely going there.....
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Mmmmmm but I can post pics to cheer us up....
FB_IMG_1471450276637.jpg
FB_IMG_1471450287881.jpg
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
I find that the quality of air makes a big difference in my nasal/sinus symptoms. Ocean air, summer rain, a walk in a rain forest... all that stuff feels very healing. (I'm sure it feels healing for people who are not sick as well, but we are more sensitive, to say the least.) Not looking forward to the dry winter air here in Alaska.
When I was first diagnosed my ENT suggested that I get some real rest somewhere peaceful and beautiful to look at, to ease stress
My mum decided that we should go to Fiji as a family and the ENT said that the humidity, the temperature and the salt air would do my sinuses good.
Well, I can honestly tell you that I didn't get any worse, but my sinuses didn't get any better either.
If you look at the weggie map you will see members that live in coastal areas of many Countries, including Australia, and they also have WG/GPA, therefore it must not matter whether you live near the beach or live near a forest (like me). This condition just is not fussy, it doesn't care.
Strange how it helps some and not others.
I agree with Alaskatom, a change of scenery, no matter what area, is good for us anyway
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
I live in GAINESVILLE FLORIDA,5 days,and then Ormond Beach nine days on a rotating basis.My avatar is the view from our condo in Ormond.The ocean air cleared up a lung infection that nothing else would.I walk on the beach a lot,and when it is windy,it hurts my nose ,and throat.So,I take the good with the not so good.Very grateful to live like this.
Thank you. Oceanic tails from the wegs afflicted!
Well, it's pretty cool that I'm not hearing people saying, "Yes. I live near the ocean and my Sinus and Lung involvement is severe or worse."
I've been in Delray for almost a week. Before I got here my lungs tasted like blood most mornings and my sinus and throat was inflamed.
That went away after a day of ocean. Which is mind blowing considering how hard it is to stop that normally, as everyone here knows.
Neurological involvement increased due to increased activity and my vision and eye pain is worse. I currently have active, "severe" wegs but Im putting off chemo as long as possible.
So, I know, obviously, beach is not a cure but I live in Asheville and get deep into some good mountain air. It beats Jersey but doesn't hold a candle to the ocean effects on sinus and lung.
This is the first time a drove myself on a long trip in over two years. It was sketchy. I took a wrong turn and made a long ride longer. Wegs in the brain did some damage.
But somehow, balancing meds, rest, exercise, nutrition, low stressors, I was able to enjoy a great week with my kids. No bigger prize. None.
So, anyone struggling, in the marathon of painful days, I offer this as hope. Help others, forget yourself and each day can get incrementally better. Undetectably better at times. Slowly? Yes! But it accumulates.
Kids and wegeners can be really, really hard to manage.
Glad I din't give up. You never know how many precious moments await. IMG952988.jpg
Best wishes,
Tom
----------------------------------
2 years untreated. Dx w/ biopsy - 2000
Tx Plan:
NUTRITION
RESTORATIVE SLEEP
RAISE ANABOLISM
REDUCE ALL INT / EXT STRESSORS
Tom, if your wg is active, dont delay the chemo. The longer you wait, the harder it will be to quiet the beast. Also it can cause more damages.
I am glad that you had great time. Take care. Sending prayers....
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
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