One good thing Wegener's has brought into my life...

[me2]

I thought it would be interesting to hear from others their experiences with things that WG has brought into their life that they might not otherwise have had.

It could be anything. Friends , empathy , knowledge. I don't want to try and define or limit this but open it up to anything that has been a net positive. It could be things you've had to learn to survive or cope. Things that were a break through on a personal level for dealing with the disease. Maybe a good medical trick that helped at just the right time.

I'm thinking you don't have to try and start with the MOST important but simply share things- maybe little, maybe big. Share more than once. I know I have a fair list after having this thing for over 30 years.

So, I'll prime the discussion and pick something. hmmmm

I know one thing that was a real blessing to me was to be able to help my family members with their medical problems. If I had not spent so much time and effort in the medical system I would not have known anything about how to help them in their time of need.
I got to spend time with my dad helping him in his last days and I had a lot of insight into the things that could bring him comfort and ease. If I had never been sick I would have been clueless and would have felt bad that I didn't know what to do to help him.

I knew a fair amount about medications and I think more importantly I was able to know how to comfort him when he was no longer able to talk and tell us what he needed. He lay in the bed for long periods of time and from personal experience I knew the absolute heaven it was to sit up and simply be upright for periods of time. I would help him up on the side of the bed and just sit with him.
When he lay back down I could see relief and deep relaxation come over him. I would never have thought of this without WG as my teacher.

So how about you guys?

[Alysia]

Wg brought me the love of my life, my beautiful Phil, through this forum (Thanks God and thank you andrew). I am grateful for the time we shared, and for Phil's sweet eternal love ♡♡♡

2388

[mishb]

Kirk, I was so sure that you were going to say US :wink1:
The one good thing that Wegeners has brought to my life is - you guys and gals :hug1:

Seriously, as an adult I have always been a loner. My husband and I have friends but not ones that we get together with, only old school mates that we never actually see.
We are both very quiet (yes, believe it or not) and even after 30 years of marriage, we enjoy each others company the most. We were never ones to go to parties or out to pubs etc, because I don't drink. so it wasn't our scene.
Unfortunately, this made our two daughters very anti social as well, and is probably the reason they both work with me.

Having you guys and this group, and also creating a support group for members in Australia and New Zealand, has brought me out a little bit.
I enjoy meeting all of the new weggies that I can have a cuppa with. I still don't like meeting people in general, but weggies are different.
I'm still not much into the talking scene, but I try and am getting better.

I also agree with you in regards to the medical issues. Empathy is also a big one for me. I now have a lot more patience for people.

I think (I hope) I have more friends than I have ever had before - love you all :hug1:

[me2]

Well of COURSE its you guys Michelle - that's why I had to say the list can't be in order. There are too many things at the top. I'm surprised to learn these things about you .
I just always assumed you were a major politician or something- maybe the mayor of Alice Springs?

[Geoff]

Nice Thread!

People think I am mad when I say getting WG was the best thing in my life. Of course, literaly thats rubbish but I have learnt to count my blessings in the past 8 years and achieved a very different outlook on life.

1) I have made internet friends around the world and been very fortunate to have met some of them. You may have seen the pictures (Close encounters...)
2) I realise the true worth of most things in my life and am grateful for every little thing.
3) I am in awe of the fantastic medical staff working here in the NHS and love meeting them at my hospital visits.

I will leave it there for the moment and come back to this thread later!!

[annekat]

The first thing that comes to mind for me, too, is this group of people and the friendships I have made here. I'm just sorry that we all have to have WG in order to be friends! But really, there wouldn't have been any other way.

I suppose WG has been character building for me, too, improved me as a person in some ways, but I'll have to think a little harder in order to elucidate that a little better.....

[me2]

Yeah, the character building part is not so easy to put words to. I do know for an absolute fact that I would have been a very , very different person without wg.
It brings to mind a favorite saying from James Allan - circumstances do not make the man, they reveal him to himself. I remember pondering deeply what kind of man I wanted to see emerge from rather severe circumstance. I realized that not only did this illness strip away the veneer and reveal what I was but also allowed me some choice to then improve.

If I had lived a comfortable life I would not have had to stretch my character to rise to my circumstance. Of course I can not say I was entirely successful.

I am grateful that , for whatever cosmic reason, wg has selected such great people to navigate the path and share the journey.

[annekat]

I agree, for the most part, as creepy and wicked as WG is, it has excellent taste in people, and this forum is the evidence!

[mishb]

I just always assumed you were a major politician or something- maybe the mayor of Alice Springs?

I must work on that - one of the only places in Oz that I have never been too

Question: why is it that WG chose to habitat the bodies of awesome people?

I'm not just saying this, it is actually true.
I am in other groups for RA and Lupus and Mixed Connective Tissue Disease, and for some reason, people in these groups lack something. hey are not as friendly, not as caring and they certainly don't have a funny bone.

[me2]

Question: why is it that WG chose to habitat the bodies of awesome people?

I'm not just saying this, it is actually true.
I am in other groups for RA and Lupus and Mixed Connective Tissue Disease, and for some reason, people in these groups lack something. hey are not as friendly, not as caring and they certainly don't have a funny bone.[/QUOTE]

I don't know. I first became aware of this many years ago at a Wegener's Symposium in Kansas City. One of the docs that was presenting there said that of all the rare diseases WG people were by far the most organized and pro-active. I could tell he wasn't just saying it but that it was true. Very curious.

[debra]

I totally agree with all the above posts... Geoff, I love this, because I feel the same way and people might think I'm nuts, but, hey, I am, so... Yes this sickness was a huge blessing in a very strange way... I always thought of myself as a person who wears their heart on their sleeve, but now, even more so... I've learned much needed patience, and take absolutely nothing for granted... My compassion for others is magnified and my overall understanding... Ive also met some of the most amazing people, and although not meeting face to face, feel as though i have... Getting to know others through their writing style to me reveals more than a face to face meeting, on so many different levels... I guess there are a lot of gifts that came from this, but most important of all, was my being brought closer to God... Then He takes care of the rest, support and friendship, ect.... Would have preferred an easier way, but it is what it is... One of my favorite sayings! Thank you, to everyone here, its really awesome seeing people suppost each other and exceptance is an awesome thing... The world seems nuts to me, so coming here feels nice, different... Thank you, Andrew for making this group possible, and all that help... Debra...

[Jaha]

This question does have to be addressed in sections or at different times. Having this forum to communicate with other Wegener's people and their families, has really been a life saver at times. I have learned thru you my friends, that not everything is a crisis. I have also gained some self confidence from sharing and trying to calm some storms for others, as you guys do the same for me. I love the fact that even if I don't feel like talking, I can always come here to read, learn and have compassion.

[Yvonnea]

Good question. I would have said nothing good came of it. But I have made a couple of very good friends, and "met" lovely people on this forum.
I wasn't diagnosed until I was almost 30. And have to say up till then, my life was very good. I seemed to sail through everything, and because of this I don't think I had much empathy or sympathy for people who may have had difficulties. Definitely become more patient and less controlling. Also I was very vain, but saddle nose and prednisone weight puts an end to that. So maybe I have become a nicer person...just maybe...

[Wegetarian]

Well its been an exotic experience for sure.. I do think the posts about it building character and empathy are the big ones. I couldn't really understand sick people the same way I do now, and also realize that not all diseases are easily visible nor can I know how they feel.

In a weird way its also made me less fear dying. Its not something I thought about much before, or know. But I did consider it a lot more scary before. I think I used to be a person who lived a lot in the moment before, but now even more so. In a way I've also became a bit more health obsessed - like I've always been fat, but now I've taken steps to eat healthier and exercise more as I try to make more healthful choices.

Sometimes it can be a bit fun too, like say someone complains how they are going into some very minor surgery, and if I feel that they are just looking for attention I'll just say that I understand how they are feeling, and that I was also nervous when I was going for brain surgery :)

[vdub]

Empathy.... I used to watch people park in the handicapped parking space, then get out of their car and walk into the store without any difficulty. I used to think they were just being lazy and using someone else's handicap sticker to get a good parking spot. I still think some are, but I now cut them some slack and don't have evil thoughts, because I have no idea what kinds of difficulties they are putting up with. The same with companion service dogs. Who am I to judge what they need?