Three Years Today

[marta]

Three years ago today I got a name for the beast within.

As all of you know, there's been some great lows and some equally great highs during the journey thus far. Quite something aint it?

I've learned so much, I feel quite confident having some verbal WG judo with some docs, never thought I'd know more than a doctor about anything health related, but here we are.

I've also met some fantastic people, and people in my town especially (and I'm working on making it in every town in the Western World) have gone through a learning curve along with me. I can say with certainty that my town is probably the most aware town in the world when it comes to autoimmune disease.

I just got a sponsor for our next PJ Day event and our new fledgling foundation. Mobil 1 will be our sponsor and it seems like we will be getting a huge financial infusion next PJ Day. We also have sponsorship from a car dealership so next year you'll see pictures of our PJ wrapped special events car. We have the support of one of the three big media outlets in Canada and I'm working on a contest that will hopefully get everyone talking about autoimmune disease.

This disease absolutely changed my life. The last three years have been absolutely amazing, and it's been mostly good amazing. Once over the initial shock and having to deal with the 'not dying part', it's been pretty darn good.

Thanks to you all for being my support net and the gang I've vented to, freaked out at, and used as my stone of Gibraltar

THANK YOU.

[mishb]

YAY Marta. :thumbsup:

Not YAY, that you had to even find a name for the beast but YAY that you have survived and will survive, and continue to be Awesome.

Not only have you brought awareness to your own town, but have also taught us a thing or two.......or three

I hope this year continues to be a terrific one for you

[annekat]

Marta, you have been a source of strength and inspiration to all of us. You have made the best of a bad situation, not only for yourself but for all of us and people with AI diseases around the world, through your awareness-raising efforts. The energy you manage to summon up, despite having Wegs and the responsibility of raising a daughter, is remarkable. Happy 3 year anniversary, if the word happy can apply! I hope you can celebrate by getting in some great spring skiing.:biggrin1:

[Alysia]

Hi Martha,
yes. WG changed our life. not only for bad.
there are some benefits of having WG. the most important one is being a member in this forum.
your store is great ! so funny ! and true ! :thumbsup:
who created it ? the pictures ? the ideas ?
I love it.

[pwc51]

Doesn't time fly when you have as much fun as this!

I am coming up to my 4th anniversary but being treated for my second flare. Life has certainly never been the same since my diagnosis with some disappointing restrictions on what I can do now compared to what I could do before WG.

I think I speak for everyone on this forum in thanking you for your enthusiasm and associated efforts - it is an inspration for us all. In my case I get very envious of your skiing!

[pberggren1]

10 years for me. Think I will do a double sub, Neph/Pulmo.......lol. I've already done the residency.

[Michael Bell]

Hi Marta, 1 year for me, and I am now back at work full time. This involves 4 days 8 till 8 4 days off and 4 nights 8 till 8. I am so happy to have managed this but your inspirational achivements are truly amazing. Keep up the good work and NEVER, EVER give in to this awful illness.
Michael Bell.

[annekat]

Two years for me, not counting the time I wasn't dx'ed..... My, time flies when we are having fun!

[Alysia]

my "resume":
next septemeber it will be 5 years for the acute onset.
diagnosis was in october (by old and wise lungs doc) although for about half year after that, there was a question if it isnt WG, because of 2 false negative nose biopsies.
but it started years before: fatigue, joints pain, coughing, runny nose. skin rash, ears problems.

[marta]

Hi Martha,
yes. WG changed our life. not only for bad.
there are some benefits of having WG. the most important one is being a member in this forum.
your store is great ! so funny ! and true ! :thumbsup:
who created it ? the pictures ? the ideas ?
I love it.

The t-shirts and merchandise was a communal effort, but as I look back on the thread (http://www.wegeners-granulomatosis.com/forum/off-topic-discussion/1069-wegeners-shirt-ideas-2.html) I see that I haven't made many of those, I know there is another thread that I used a bunch of stuff from, but I can't find it, I think it has a different thread title. Maybe one night when I can't sleep I'll make some new ones and put them there. If you have something you'd like to see, post it up here and I'll try and make some when I have some time. It's a fun creative vent.

Thanks to you all for your kind words. What a phenomenal group of people here. I'm really blessed to be part of the gang. As I go back through my posts, I really am reminded of how many crazy places you've all pulled me through, and am reminded of how insane this thing we have is as there are four people from this forum that I knew at the start and they are no longer with us.

I feel like I've gone through boot camp with so many of you on here, which means that you'll forever hold a special place in my heart.

Thanks again, and I'll let you know when I make a few more t-shirt's et al.

Peace and big love.

marta

[rif]

My son passed his four year anniversary since official diagnosis in march, like annekat not counting the months leading up to this time.

Rif

[Psyborg]

Hmm...how'd I miss this. I blame Pred.. :p I'm following up about a month behind you Marta :).

It still feels new a lot of the time. I'm still trying to get my feet for how to deal with the doctors at times.

[Geoff]

Wow where did those last 5 years and one month go!! Lets see....oh yes taking drugs by the bucket full, duvet days, hospital visits, sleeping, aching, moaning (ha ha) and getting on with MY LIFE!!

Yes you are right Marta, life will never be the same but I am blessed to have 'met' so many great people thru this site (Thanks again Andrew) it has been an amazing roller coaster and made me realise just how lucky I am, yes Lucky!

I know what things in Life really matter and the true 'worth' of 'things', top of the list (apart from family of course) is friends. All of you!!!

Thanks Marta and so many others for lighting up my life, being inspirational and not letting me wallow in self pity. :rolleyes1:

[marta]

I love you guys! Really.

[drz]

It has been quite the adventure the last three years for many of us it seems. Three years I left the inpatient hospitals for three months in a nursing home. I had improved enough so my survival wasn't the question anymore, it was wondering what kind of life I would have and how much I could recover. Would I ever be able to walk again without a walker? Would I ever get out of the nursing home? Those were the questions. Three years ago my goal was to be able to get out bed into a wheel chair and make it to the toilet 10 feet away by myself. Fortunately things did get better and life seems so much better now as I am living alone in my own apartment in a light assisted living complex where I get by OK. I was the only one on my nursing home ward that ever left alive. My life is a lot different now than before the Wegs got me but i am happy as too how much I did manage to recover and am hoping for many more good years ahead too. It has been great watching many fellow travelers on the same journey and also sharing in their recovery and successes as we struggle here together to rebuild our lives after Wegs. And to be able to share the bad days and down times with others who REALLY understand our struggles. Thanks to you all!:hug3: Lets celebrate we are alive and still here!:hug3:

[marta]

It has been quite the adventure the last three years for many of us it seems. Three years I left the inpatient hospitals for three months in a nursing home. I had improved enough so my survival wasn't the question anymore, it was wondering what kind of life I would have and how much I could recover. Would I ever be able to walk again without a walker? Would I ever get out of the nursing home? Those were the questions. Three years ago my goal was to be able to get out bed into a wheel chair and make it to the toilet 10 feet away by myself. Fortunately things did get better and life seems so much better now as I am living alone in my own apartment in a light assisted living complex where I get by OK. I was the only one on my nursing home ward that ever left alive. My life is a lot different now than before the Wegs got me but i am happy as too how much I did manage to recover and am hoping for many more good years ahead too. It has been great watching many fellow travelers on the same journey and also sharing in their recovery and successes as we struggle here together to rebuild our lives after Wegs. And to be able to share the bad days and down times with others who REALLY understand our struggles. Thanks to you all!:hug3: Lets celebrate we are alive and still here!:hug3:

You really are an inspiration drz! Truly!!!

[Evie22]

Hi Marta,
Well done, first year or two can be difficult, but leads to better things, you have a bit of catching up to do with me at 17 years, and believe it or not I consider myself Lucky, Lucky to survive with a reasonable good life,Lucky to have met the right Dr. at the right time, Lucky to have 2 great supportive sisters,Lucky to be in full remission 15 years> Lucky to have found this site and all the rest of you great survivors.
And last but not least Lucky to have the Internet,as when I was first diagnosed ,I did not have a computer and it was another 6 years,and boy it has open up the world to me and the knowledge I have gained about my health unbelieveable.
Good Luck Marta