Awkward Situation

[JanW]

My husband has just moved into temporary office space and the receptionist (for the entire suite of offices not just his firm) has an obvious saddle nose and trach. He would love to ask her if she has WG, but obviously, he's only just met her and doesn't want to offend her. He figures that she may never have met another WG patient in real life, might not know of options re: SS or SN, or just want to talk to someone (me).

How do you guys think he should approach it? Or should he leave it alone? If it were me, I'd just ask, but then I'd be looking at her with the same nose. It's a lot different if you're thinking that this person just met you and this is the first thing that they notice (the reality is, of course, that the first thing he noticed was the trach -- she's a receptionist so covering the hole constantly to speak).

And, on the off chance that there is a flaming Irish redhead here with WG working in the Grand Central area of NYC -- my husband met you today!

[elephant]

That is a hard one? But, I would still ask. Then she could correct him if he's wrong. Life is too short and if you could help her or vise/versa, why not. Go for it.

[pberggren1]

I say go for it. I myself would not be offended with an explanation.

[Sangye]

I would ask. How about something like "I couldn't help but notice you have a trach. My wife has a rare disease that almost caused her to need one and it caused her nose to change shape. She was only recently diagnosed."

That leaves the door open for the woman to ask what the disease is and to say if she has Wegs or is in the "undiagnosed" state. It also doesn't mention her nose directly. She might feel more comfortable pointing it out if she knows.

[elephant]

Sangye, your version sounds good. :)

[pberggren1]

Sangye's versions always sound good.

[Sangye]

LOL-- not if you heard me in person! Long before I had Wegs I was dx'ed with Foot In Mouth disease. I've got a severe case of it. :D

[elephant]

Oh Sangye, I still have foot in mouth disease. Sometimes I go into hiding.....;(

[pberggren1]

Isn't that the same or similar to Mad Cow Disease?

[Lola]

I think I would be inclined to mention only the obvious trach - not the nose. If he's wrong, he hasn't made her overly self conscious about her nose. If he's correct, no harm.

[Cindy M]

I have had a somewhat similar situation happen to me. I changed the pharmacy for where I pick up my prescriptions and I am sure glad I did. The technician noticed all the meds I had been on and asked me if I needed any more information on them. We started a conversation and she finally came out to ask what disease I had, when I told her she wasn't surprised, she has been in remission of 6 years from wegs. She is the first persion that I met that has this disease. It was one of the best things that happened, I was on cloud nine to talk face to face to someone else. So I say go ahead.

[DEE]

when i went to my ent consult yesterday the first thing he said was (Youve got bigger since the last time i saw you ) which was seven months ago he his normally a welmannered person but i think mouth went into action before brain !!!
he quickly covered himself by explianing to the nurse about me having wg and the meds caused the weight gain
another time hubby in clothes shop getting impatience asked me what im looking for and when i told him he said Well non of these are big enough for you :) we tend to laugh about these situations and im happy to explian why i biggger why my nose is a different shape infact i find it better when they ask as i have had people who know me avoid asking and i can tell that they feel uncomfortable around me
but other say they are interested for the reason mentioned above they might be able to help or just give you the chance to talk
sangye nothing wrong with foot and mouth on occasions at least you tend to find out what people really think !!!!!
DEEx
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[Brooke]

I would ask too!

[Col 23]

I like Sanye diplomatic way of asking given that its a work place.
cheers Col 23

[survivor]

Hello JanW. I certainly agree with all those who advised for your husband to talk directly to the lady about it.

[pberggren1]

Cindy, that is rare that you would meet a fellow Weggie that way, especially your pharmacist!

[jola57]

Jan, Sangye's suggestion is right on, i think all of us would welcome to know someone else with this diseas in person. I say go for it and have your husband ask her. Dee, I loughed about the store and husband, how well i remember the same conversation.

[pberggren1]

Cindy,

Would you be able to tell us more about your pharmacy technician that has WG? I am curious how long she has had WG and when it was diagnosed and what meds she is currently on. Do you know if she is on this site?

[Lightwarrior]

LOL-- not if you heard me in person! Long before I had Wegs I was dx'ed with Foot In Mouth disease. I've got a severe case of it. :D

LOL...I learned to walk with one foot in my mouth.

[elephant]

I am use to hopping around with one foot too. :)

[TBulger]

A good friend recently commented that I have a lot of tact since I haven't used any of the tact that I was born with.

[coffeelover]

when I had my trach in I liked it better if people asked instead of avoided....so maybe asking will not be so bad.

[Sangye]

A good friend recently commented that I have a lot of tact since I haven't used any of the tact that I was born with.
Hilarious! :D

[DEE]

ive just come back from local shop i try to make it there for a newspaper on good days !!!
whilst talking to a friend an older lady pulled uo along side us on a mobility scooter she knew my friend but not me
she said oh good i can ask her now we both looked at her then she said Whats wrong with you?
i told her she said she had seen me around and i didnt seem to be getting any better but was use to seeing me rush around when i was at work
my relpy was thank you for asking and caring she looked surprised but when i told her some people ignore me rather than speak
she said that she wouldn t in the future because even if it is just to say hello it sometimes makes your day feel better :)
DEEx

[Jack]

I think we can forget or just underestimate the value of human contact. A friend came to visit me yesterday and did some jobs around the house that I'm no longer able to do. We sat in the garden for a beer and a cheese sandwich and it made my day. It's the first time I've been outside since getting out of hospital. :)

Perhaps we should all be spending more time working on our mental well being and not obsess so much over the drugs. ;)

[Hammy8241]

I think we can forget or just underestimate the value of human contact. A friend came to visit me yesterday and did some jobs around the house that I'm no longer able to do. We sat in the garden for a beer and a cheese sandwich and it made my day. It's the first time I've been outside since getting out of hospital. :)

Perhaps we should all be spending more time working on our mental well being and not obsess so much over the drugs. ;)


Agree Jack. I met up with a friend yesterday who i was able to chat openly and frankly with yesterday knowing that nothing i said would ever be repeated. It was great and certainly took a load of weight from my shoulders. Highly recommend it.

back to the thread subject: JanW -Has there been any progress as my curiosity is starting to get the better of me?

[gwenllian111]

I think the lady would probably appreciate being able to talk to someone about it! When I had bad breathing problems, it often helped me to be able to talk about it to colleagues so that they could understand better what was wrong.

[JanW]

He was in that office the day after and she wasn't there at that time, and he's been travelling since. I will let you know as soon as he sees her!

[Hammy8241]

Thanks JanW. I hope he gets around to it soon:)

354

[Sangye]

LOL-- SO funny! Same here... :D

[elephant]

So true and funny...

[DEE]

must be the day for it Jack
ive just had a visit from a friend of thirty years with her daughter and ten week old grandson not seen them in nearly for years since my daughters wedding
like you been in the garden too :) ive know for about a week they were coming and have really enjoyed theie visit even had some of her old neighbours pop in to see the baby
hubby down the garden painting a new arch way hes made for the garden as long as i keep him supplied with tea hes ok !!!
glad to hear you enjoyed your time with your friend too DEEx

[Hammy8241]

My husband has just moved into temporary office space and the receptionist (for the entire suite of offices not just his firm) has an obvious saddle nose and trach. He would love to ask her if she has WG, but obviously, he's only just met her and doesn't want to offend her. He figures that she may never have met another WG patient in real life, might not know of options re: SS or SN, or just want to talk to someone (me).

How do you guys think he should approach it? Or should he leave it alone? If it were me, I'd just ask, but then I'd be looking at her with the same nose. It's a lot different if you're thinking that this person just met you and this is the first thing that they notice (the reality is, of course, that the first thing he noticed was the trach -- she's a receptionist so covering the hole constantly to speak).

And, on the off chance that there is a flaming Irish redhead here with WG working in the Grand Central area of NYC -- my husband met you today!

Ok Jan times up. :D Any update on the quandary please? I presume that he has not seen the lady again but as the cats only got one life left (curiosity is just killing him,) I just thought i'd ask :)

[Sangye]

LOL-- Hammy, I'm so glad you're in our group. You make me laugh every day with your funny comments. :D

[Hammy8241]

LOL-- Hammy, I'm so glad you're in our group. You make me laugh every day with your funny comments. :D

Laughter. The best medicine. Uses more muscles than crying so I keep fit too!

[JanW]

Can you believe that he only saw her once more and never again? It's possible she could have been a temp -- although she seemed quite well known around the office -- it's shared though and she doesn't work for his firm. I hope she didn't get sick.

[Hammy8241]

Can you believe that he only saw her once more and never again? It's possible she could have been a temp -- although she seemed quite well known around the office -- it's shared though and she doesn't work for his firm. I hope she didn't get sick.

Bummer!
True life is often not as exciting as a 'soap'.

In a soap, the lady would have turned out to be a long lost relative, whose husband had just been declared bankrupt because of a fraud committed by his best friend, who needed the cash to repay the moneylenders, who he borrowed money from to pay the blackmailer who has a picture of him in bed with another ......... etc. Maybe she was kidnapped?

Do I watch too much TV or is it the pred? :o

[Jack]

Just been channel hopping the TV stations and I heard the word Wegener's. It was an American soap called House all about life in a hospital and they had a case of cyclophosphamide resistant Wegener's. They had obviously done their homework and a lot of it was familiar, but not the exploding spleen and blood drenched surgery!

[Luce]

I love House! Hugh Laurie is Dr Greg House who specialises in diagnosing, which means he comes across rare conditions all the time. Wegener's is frequently mentioned but is always turns out to be too common a diagnosis.

I've often joked with my husband that we could playing a drinking game - 1 shot every time someone mentions Wegener's, cyclo, pred, plasmapharesis etc on the show.

[Jack]

In the real world, the "something else" diagnosis comes first and then it turns out to be Wegener's. :(

[Sangye]

House is very popular here, but I've never seen it.

Hammy, she was totally kidnapped. But by whom? I don't remember where I read it, but both Lady Gaga and Leonardo di Caprio were spotted in the area just hours before.

[pberggren1]

You guys are too funny. My back and face muscles now hurt from laughing too much.

I don't watch much TV. Just the news and Jeopardy usually. But House I like quite a bit. I find Dr. House quite likable.