Intro

[ST316]

Hello,

This is my first post.
i live in NY tri-state area. I've always had allergies and sinus issues since childhood. Was finally planning
sinus surgery for Dec 2015 to take care of myself and hopefully not deal with Sinus infections any longer.
Quickly found out after the surgery (FEB 2016) when the Dr said I have never seen anything quite like
this, that my problems were not to be resolved so quickly. Luckily I was referred to Dr. Lebovics and Dr. Lally at HSS
who swiftly put me on Retux. Did four rounds in April
Hopefully I will taper well on the Pred and my issues will be resolved. I am having doubts of this happening as
smoothly as I am implying, but I can only hope it does.

I have a question to put out to all.
How does one with this disease go out socially with friends and or family and when asked "How are you and what have you
been up to lately?", respond without bringing it up. I feel like I am being dishonest if I do not bring up GPA, but at the
same time do not want to put a damper on what is supposed to be a good time easy dinner out.
I feel like this issue can turn a person into a recluse.

What experiences have you had or any ideas for me to try to not become a slave to this disease.

Thank you in advance for much needed advise.

[annekat]

Welcome to the forum, ST316. I haven't been keeping up with the forum as well lately, so my apologies to any other new members and posts I haven't acknowledged. I will say that this is the best place to come to find the information and friendly support that you need.

It's sometimes hard to gauge whether we should mention our illness in public while relaxing with friends. I would say, play it by ear, and if anyone has a reason to think you have some health concerns you might want to talk about, they'll ask you, if you are close and with other close friends. Every situation is different. There's a running joke here, "you don't look sick", because a lot of times we don't, and in those cases there is often no reason to just blurt out that we are. We aren't being dishonest by just letting the conversation wander at will but being prepared to discuss it if it comes up. Good friends will find out eventually, just in everyday conversations. The important things about being in public are: it's not contagious, and people might like to know that, but we are on drugs that suppress our immune system so are more likely to catch things from others. I have had almost no problem in this respect, though I'm in public two days a week in an outdoor setting, handling money and talking to all kinds of people. I practice frequent hand washing and using sanitizer gel. If I start coughing, I tell people my condition is not contagious, is more like allergies, etc. But I am a bit of a recluse, otherwise, and I suppose WG/GPA has made me more so. On the other hand, since joining this forum in 2011, I have made dozens of genuine friends all over the world. That is just my rambling 2 cents about what you asked, and I'm sure there are other viewpoints. It sounds like you are in the hands of good doctors. It can take awhile for Rituxan to work, and tapering pred can take years. Everyone is different, and things probably won't go according to a predictable schedule. Just know that this disease can be managed effectively and it may not affect the course of your life or your social activities as much as you might fear. I'm glad you found us, and please keep us posted! Also use the search function to find all kinds of info about all aspects of W/GPA.

[ST316]

Welcome to the forum, ST316. I haven't been keeping up with the forum as well lately, so my apologies to any other new members and posts I haven't acknowledged. I will say that this is the best place to come to find the information and friendly support that you need.

It's sometimes hard to gauge whether we should mention our illness in public while relaxing with friends. I would say, play it by ear, and if anyone has a reason to think you have some health concerns you might want to talk about, they'll ask you, if you are close and with other close friends. Every situation is different. There's a running joke here, "you don't look sick", because a lot of times we don't, and in those cases there is often no reason to just blurt out that we are. We aren't being dishonest by just letting the conversation wander at will but being prepared to discuss it if it comes up. Good friends will find out eventually, just in everyday conversations. The important things about being in public are: it's not contagious, and people might like to know that, but we are on drugs that suppress our immune system so are more likely to catch things from others. I have had almost no problem in this respect, though I'm in public two days a week in an outdoor setting, handling money and talking to all kinds of people. I practice frequent hand washing and using sanitizer gel. If I start coughing, I tell people my condition is not contagious, is more like allergies, etc. But I am a bit of a recluse, otherwise, and I suppose WG/GPA has made me more so. On the other hand, since joining this forum in 2011, I have made dozens of genuine friends all over the world. That is just my rambling 2 cents about what you asked, and I'm sure there are other viewpoints. It sounds like you are in the hands of good doctors. It can take awhile for Rituxan to work, and tapering pred can take years. Everyone is different, and things probably won't go according to a predictable schedule. Just know that this disease can be managed effectively and it may not affect the course of your life or your social activities as much as you might fear. I'm glad you found us, and please keep us posted! Also use the search function to find all kinds of info about all aspects of W/GPA.


I imagine if I give it a little more time, than I will have other topics to talk about other than what has been going on in the last 7 months.

Thank you so much for your input.

[mishb]

Hi ST316 and welcome. Gosh it sucks that you had need to find this forum, but I'm so glad you did.

Anne has given such great advice for you.

I agree with her in everything and definitely in making friends from all over the world.
See, it's already happened you have some new Aussie friends that know exactly what you are going through.
I am very thankful for WG, for this very reason, and also for my compassion of others who may be going through the same thing, or worse.

I have had WG for many years and diagnosed for 6 years. There are still many people that I associate with, that have no idea that I have WG
I still work full time and try to get around to most things during the day, but come to the evening and I do not move from my comfy chair and my laptop and television.
I do tend to avoid parties, and I have always been a homebody so that part has never been a problem. The main family events that I always avoid are little kids birthdays or christenings, that sort of thing.........the germs are a big issue with me, I am basically OCD for germs.

Keep asking questions and learn as much as you can, you will find that you will eventually become comfortable talking everything WG

Take care of yourself, and remember to .........

[Pete]

Hi ST316!

Welcome to the "club". I'll echo what Anne and Michelle have said. I'll also add the advice that the doctor who diagnosed me passed on to me: Take your meds as directed and live your life as fully as possible.

I'm fortunate. I was diagnosed within a month of symptoms appearing. I see a Vasculitis specialist at Cleveland Clinic who provides me with top notch care. Thus, I've been able to live a life that is the same as my pre-wegs life. It's possible.

I retired about nine months before I got sick. My wife and I moved to a different city just before I got sick. My family and close friends know what I have, so other than the usual remarks about how I'm doing, it doesn't come up. I don't talk about it to people who don't know me well.

So far, so good. Hope things go well for you!

[MikeG-2012]

I'll chuck in my .02 here.

For most people (close friends and/or co-workers), if they ask what I've been up to lately, I tell them. I usually say, "I've been fighting a rare auto-immune disease the past ___ years." I then apologize in advance if I have to skip a get-together in the future.

Some people, still don't know. I'm a really, really private person, but if I never tell anyone, then I am hiding an already hard to diagnose disease form the world around me. For the most part, I've been an open book to people in my immediate circle, so that I can educate folks on what its like to have GPA.

My advice to you is, once you are more comfortable telling folks, go ahead and tell them. If you are missing gatherings that you always attended, tell them why. Tell folks you want to know and don't tell the folks that will just talk about you behind your back.

Most of all, LIVE LIFE! Otherwise, the disease wins.

[Debbie C]

Welcome to our "sick family "..in more ways then one !! I agree with everyone. You should not be ashamed you have this disease,you didn't ask for it. I bet you would be surprised of how many people have something going on but don't mention it. For example...I was getting my scripts filled and the lady working there said her sister has wg also. You will have some ups and downs with this disease....my advice is if your friends are that close they will understand but not telling them anything { like Mike said) may lead to them just talking about the "new you"..Take care

[Dirty Don]

NO being reclusive, unless it's already in your nature. WG does not preclude social activities & the questions asked. You're on drugs that basically make you 'normal' again as my pulmonary doc told me, so the discussion can be kept simple if YOU want. If peeps ask about your health, keep it simple unless they ask further. No need to pursue misery if not required. I became very tired of explaining it...I usually say Google it! LOL As long as peeps see you upright, almost any answer works...they are concerned only for your current well being as you stand in front of them. Especially when it's as complicated as WG/GPA. Family is one of the most difficult social situations, so best to keep it simple. Best to you...it'll be fine.

[ST316]

i would like to thank all of you for your very generous responses. I do go to work everyday and have managed to keep myself as active as possible during
this roller coaster period of this disease. Am taking things one day at a time since there does not seem to be a constant for me right now. I do want to become
a part of this very important forum, and will do my best to keep up and be involved. Yes, I do believe this forum is a good thing and it is something I look forward
to joining.
Thank you again for your support.
p.s. not sure what quick reply means, but there are no options for any other reply so here it goes.....

[annekat]

I'm not sure, either, but for one thing, it means one where you don't "reply with quote". You're doing fine. No pressure to participate any more often than you have time or energy for, but we do hope to hear from you again...