I am 5 years old

[marta]

This past Mother's Day, I turned five. The new and improved Weggie me that is.

Five years ago today I was released from the hospital, armed with a concrete diagnosis and a plan of attack. I was hopeful because at this point in my journey I still hadn't discovered the severe lack of coherent knowledge of this disease within the medical community. With the help of the people on this forum, my family, loved ones and friends at home, and in time, my experiences, I've become a better patient. Sadly, I've learned how to expertly navigate the medical system only because I've become a permanent part of it, but in doing so I've also seen some fantastic opportunities for positive change.

I was thinking about this when Brian and I went for a little Mother's Day mountain bike ride in the forest, and I pondered the journey over the last five years.
It sure has been a ride. And it's opened up doors in my life that I never even imagined, let alone dreamed about.

I read a little thing in a book not that long ago (forgive me if I've said this before, but I find it so empowering) - I'm paraphrasing, but it's along this line - Our souls design our life struggles before coming into our bodies to create opportunities to bring out the best in us. Wow! Does Wegener's ever fit that bill. Apparently we like to challenge ourselves.

Aside from the pain in the everything part of it, there are some beautiful things that have come out of it for me (and I'm guessing to some extent everyone on here.)
The new friends around the globe.
New heroes.
New challenges to promote creative problem solving, and plenty of opportunity for practice.
New opportunities for work, for life, for volunteerism, for making your voice count.


I can say now, five years later, that I've gotten way more out of Wegener's Granulomatosis than it has gotten out of me.
I'm richer from our 'chance' meeting, and it (WG) is one voice closer to it's ultimate demise.

Thanks to you all for being in my corner for the last five years.
You're all total rock stars in my eyes.
And I guess I should thank Wegener's as well, for enriching my life via trial by fire.

[annekat]

Marta, I love your attitude and viewpoint. I have felt many of the same sentiments, though I've done nothing like what you have to spread awareness and improve the lives of those of us who have this. As for the many new friends I've made worldwide since my dx.... YES, and my feelings about this are deep. The community that has opened up to me is a big part of my day, every day. I'm so thankful that it exists, and don't know how I'd manage without it. I suspect I'd be somewhat sicker, both physically and emotionally, than I am now. And I'm glad to be a participant in that community, for the mutual good of all of us.

[drz]

We joined the same day. I was in a nursing home in July of 2010 still working on recovery from the coma and Weg damage. But five years later things are very different. I love being out of a wheelchair and in an outpatient role. I too have become very adept I think at being an informed patient although I often wish I didn't have to help support so many health care professionals. But still life is good although rather different now.

[mishb]

Marta, I love your attitude and viewpoint. I have felt many of the same sentiments, though I've done nothing like what you have to spread awareness and improve the lives of those of us who have this. As for the many new friends I've made worldwide since my dx.... YES, and my feelings about this are deep. The community that has opened up to me is a big part of my day, every day. I'm so thankful that it exists, and don't know how I'd manage without it. I suspect I'd be somewhat sicker, both physically and emotionally, than I am now. And I'm glad to be a participant in that community, for the mutual good of all of us.

I totally agree Anne

[mishb]

August 2010 was when I was finally diagnosed, however I found this forum a couple of months before that when google'ing, anti inflammatory diets.
I told my mum that this condition sounds like what I have, but since I'm not planning to die soon, that I don't have it.

How wrong was I - but I'm still not planning on going anywhere in the near or distant future

I read everything and took it all in but didn't join until December of 2010, because I didn't think that I would have anything to contribute, with the likes of Jack, Sangye, Phil, Lightwarrior, Elephant and many others that had so much knowledge on the subject, and here I am 5 years later and still nattering away

Happy 5 years Marta and drz

[marta]

Each day is a birthday for us all.

Thanks Michelle, Anne and drz, and happy birthday to you too bro.

You guys are my light, and I am so grateful to have you in my life.

[vdub]

I'm sure we have discussed this before, but I forget stuff. We were both dx'ed within a few weeks of each other. I was dx'ed 21Apr2010, 3 wks before you. I was still in the hospital when you were dx'ed.

I've been off the forum for a while and that's usually a good deal. It means I'm feeling well and doing other stuff. Let's keep feeling well, Marta! :-)

[drz]

My diagnosis was confirmed by kidney biopsy on April 10, 2010. By the 21rst I was in a drug induced coma as part of the treatment for my Wegs. So we are all doing better now five years later.

[mishb]

I'm always smiling and doing a 'happy dance' (in my head) when I hear of how far people have come with this disease.

Sometimes it doesn't work out for the best but hearing of good reports, gives hope for everyone of better days ahead

[Geoff]

My oh My what a thread. Reading the comments here from some of the people who have been in my corner during my life since DX brings a smile to my face, and that can't be bad!
Marta I have always loved and admired your attitiude and it was typical of you to state that you have gained more out of the experience than WG has taken out of your life. I totally endorse that sentiment! My life has become enriched by the friendship and support you have given me and so many others on this amazing Forum!
Happy "New Life" day and keep doing what you do!