New member-hi from Israel

[jvilner]

My name is Joyce and I am originally from NJ. I am new to forum. Was dx 3 yrs ago with psoratic arthritis and was on Mthx but in July 2013 started with ear problems. Very fast it became chronic with glue ear. Hearing was very effected. Only after a biopsy was taken from my ear did my rheumi dx me with wg. I am on prednisone, imuran, folic acid, vit d, calcium and Resprim. Wg is limited only to the ears, knees don't give me problems anymore. I am on aggressive treatment to restore hearing and slow progession of disease.

Still learning abt the disease and what to expect. Taking meds but thinking abt gluten and dairy free diet. I'm sure it can't hurt.

Wanted to go in June on a cruise to Alaska and to Thailand in December. My dr didn't think it smart to go away from care for too long. Was a bit shocked as I M trying to live as normal as I can. Guess I don't realize how sick I am (maybe cause I'm not in remission?). Will I ever be?

Glad this forum exists as I need the support



Sent from my iPhone using Tapatalk

[windchime]

Welcome to the forum Joyce. You found the right place to be as there are plenty of loving and warm people here to support you. There are vast archives if you have a chance to look at them. There are lots of personal experiences, rants and vents, and of course questions and answers. So feel free to share whatever you want and vent if you need to. Let us know how we can help you. And again welcome to the forum.

[mishb]

Hi Joyce and welcome.

So you are now in Israel but originally from NJ - have I got that correct?

So glad that you have found us and also our lovely Israel'ie member (Alysia) will be over the moon that she is not the only one on here from Israel ........ not that I think it is a good thing that you have to be here :crying:

But for support and also some fun and laughter - you have come to the right place.

[Dirty Don]

Welcome to a fuzzy corner of the universe Joyce...a lot of caring and informed peeps on here. Ask questions, share your experiences, vent when needed...hey! invent something! Anyway, glad you found us...please take care, follow correct protocols, have good docs (WG experienced) around you if possible or have yours consult with WG experienced docs. If you are close to a recognized Vasculitis center, then get thee hence if you haven't already. Yes, you are sicker than you may believe...I couldn't believe it at all and I almost died as have others on here. But, it really is so much better once you get going in the correct directions! Best to you!

[Alysia]

have good docs (WG experienced) around you if possible or have yours consult with WG experienced docs. If you are close to a recognized Vasculitis center, then get thee hence if you haven't already.

sorry Don, as far as I know, not such a thing in Israel :thumbdn: most of the docs don't know what is WG, even the rheumy's don't know how to treat it correctly. no VF either.
welcome Joyce :biggrin1: I already read your PM and reply to you :biggrin1:
I am counting on one hand, still, the weggies I have found in Israel:
1. me. only. for years.
2. another one here at the forum, Jymi. he is coming to the forum around the holidays so I guess he will soon be around for a bit. he is in remission as far as I know and live behind the green line.
3. one on facebook. in Tel Aviv.
4. a girl working at the cinema, I recognized her by her saddle nose and started to talk with her.
5. you, joyce.
end of the list.
for years I was SO lonely. but not since I came to this amazing forum and get to know the most amazing people on the globe :love: I wouldn't survived, mentally and physically, without my kind and wise friends here and I am very grateful have them :wub:
the best wg-doc on the globe is this forum, so you are in good hands. what meds are you taking ? don't let them do with you mistakes they did with me, by not treating it correctly.
take care and continue to write .....

[annekat]

Welcome, Joyce, and I'm so glad you found us. I'm glad your WG sounds fairly limited, so far. Sorry about the ears, I have the same problem. Probably "glue ear", though my ENT is a man of few words and hasn't actually used that term. I'll see him soon and will try to pin him down as to what is actually going on in there. I know that one ear drum is severely collapsed from the lack of air pressure on the inside, and that I can't hear at all well in either ear and therefore have hearing aids. I'm assuming this is permanent. I have a lot of inflammation in the sinus area which shuts down the function of the eustachian tubes. But I should add that some people do get their hearing back and you could be one of the lucky ones.

I'm glad Alysia has another buddy from Israel here on the forum! That is exciting! Please continue to write and participate in discussions.