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marta
02-05-2011, 04:37 AM
Hello Weggies,

Just a reminder that the book project is still on. I've had several submissions already (all gentlemen incidentally) and thought I'd put the bug in your ear again if you've forgotten.

I'm not pushing (we still have quite a bit of time) just reminding to get it in the brain again and start thinking about the story.

If you want more info, here's a page on my blog that describes it further... Weggies Unite: The Book (http://weggiesunite.blogspot.com/p/book.html)

If you haven't got an outline and want to play, PM me and I'll fire it off to you.:hug1::wub:

pberggren1
02-05-2011, 04:51 AM
I have had no energy or incentive to type out anything.

Geoff
02-06-2011, 05:27 AM
Thats a pity Phil because your journey is definetly 'worthy' of recording. Take some time and mull it over, I found it quite a cathartic experience to jot down my experience. We all travel such different paths to get here. Marta's enthusiasm and purpose warrants as much response as we can give. Its our chance to 'strike back'. Some of the recent postings about medical research and discovery is giving me an uplift. Lets keep the momentum going!!

Jack
02-06-2011, 06:32 AM
I agree. I enjoyed writing mine and having a framework ready supplied to work within makes things a lot easier. I would urge anyone who is considering it to give it a try. There is no reason why it should take too long, but it can be surprisingly easy to ramble on once you get started.

Marta - I still need to send you a photo and my details, I have not forgotten. :wink1:

marta
02-06-2011, 07:13 AM
Thanks guys. You're da bomba.

Phil. Take your time. It's not a rush, and I know you've been through the ringer since I pulled this together. I agree with Jack and Geoff though, that your story is definitely worth telling, and I wouldn't write it off (pardon the pun). If you want, you can tape it and send it to me if that makes it easier. But like I said we still have lots of time, I just wanted to put the bug in everyone's ear again.

I think I have a publisher for our book too.

pberggren1
02-06-2011, 06:40 PM
I have not left the ringer since mid November.

marta
03-08-2011, 01:22 PM
Just another reminder and maybe some of our new member might see this that haven't seen it before and want to contribute their stories.

Lemme know.

LisaMarie
03-09-2011, 12:31 AM
I am slowly but surely working on it ...been trown some curve balls lately so trying to mangae my time and rest to avoid hospitalization......I really hate this WG roller coaster...hopefully I will find out more answers in May when i go back to Mayo...Thanks for the reminder:w00t:

Brooke
03-09-2011, 01:07 AM
Hi Marta -
How do we do this again? Just fill out the outline that you email us? Can you email it to me again?
Thank you,

Jack
03-09-2011, 08:54 AM
For the information of those who have not considered doing this yet, Marta has made it very easy. There are a pre defined series of subsections provided and all you have to do is write a couple of paragraphs for each one. At least, that is what I wrote, but it is totally up to you how little or how much you do.

I enjoyed the exercise and would urge anyone considering it to take part.

(I'm still pestering my daughter to dig out an old photograph of me - I'll make it the task for the week! ;) )

NicShaf
03-09-2011, 10:54 AM
I agree, Marta made this easy to follow. I wrote mine today. It is a really great idea.
Marta, I will send it to you in a couple days, I want to have my husband proof read it, and probably make a few changes before I send you the final.

pberggren1
03-09-2011, 10:54 AM
Post some photos Jack!

Daggar
03-09-2011, 02:56 PM
Hey Marta.... how do we go about getting you Holly's information?

Hope the fam is over the nasty bug....

hilhoff
03-09-2011, 04:38 PM
ill get it to you as soon as i can marta. :)

Jack
03-09-2011, 09:12 PM
Post some photos Jack!
Not sure I can do that. Everyone here thinks that I look like Leonard Cohen! :wink1:

freakyschizogirl
03-10-2011, 12:34 AM
Sounds interesting...Where do i get the
pre defined series of subsections , lol

Psyborg
03-10-2011, 12:43 AM
Not sure I can do that. Everyone here thinks that I look like Leonard Cohen! :wink1:

You mean your not? :)

freakyschizogirl
03-10-2011, 05:32 AM
Gonna show my age now...Who's Leonard Cohen??

chrisTIn@
03-10-2011, 05:37 AM
He 's a great singer/songwriter...:cool:

pberggren1
03-10-2011, 05:39 AM
I would just stick with old Lenny then Jack! lol:wink1:

marta
03-10-2011, 06:25 AM
Hey gang,

I'm just heading out to drive to the city for the big day tomorrow. RTX here I come. I will post the outline on my blog so that you can copy and paste it and use it at your leisure. I will let you know when I get that done.

and Sam, here's a link to my fave Leonard Cohen song.... YouTube - Leonard Cohen - Tower of Song (http://www.youtube.com/watch?v=wYJf4J7VBaY) enjoy.

Peace y'all.

Brooke
03-10-2011, 06:25 AM
Here is jack!! 846

drz
03-10-2011, 08:30 AM
Hey gang,

I'm just heading out to drive to the city for the big day tomorrow. RTX here I come. I will post the outline on my blog so that you can copy and paste it and use it at your leisure. I will let you know when I get that done.

and Sam, here's a link to my fave Leonard Cohen song.... YouTube - Leonard Cohen - Tower of Song (http://www.youtube.com/watch?v=wYJf4J7VBaY) enjoy.

Peace y'all.

Here is another link where Leonard is impersonating Jack: :wink1: Note the HAT!

LEONARD COHEN (http://www.leonardcohen.com/)

Daggar
03-10-2011, 08:35 AM
Good Luck Marta!

Holy crap Jack -- is this you covering Cohen's "Tower of Song".... I could of sworn!!

YouTube - Leonard Cohen - Tower Of Song (http://www.youtube.com/watch?v=5BOKCil8kdw)

Jack
03-10-2011, 08:43 AM
It can make life difficult when you have someone out there impersonating you. :razz:
I suppose he just envies my talent and good fortune. :wink1:

Daggar
03-10-2011, 08:52 AM
Don't feel bad - I used to get approached in public places about looking like "Jerry Seinfeld" .... haven't looked like him for a while though - facial hair and aging!

pberggren1
03-10-2011, 04:01 PM
I would like Jerry's Porsches and house.

Sangye
03-11-2011, 02:59 AM
Phil, you have the Batcave. WAY cooler. :wink1:

pberggren1
03-11-2011, 06:40 AM
Phil, you have the Batcave. WAY cooler. :wink1:

Very true! And Wayne mansion too!

freakyschizogirl
03-11-2011, 06:45 AM
Very true! And Wayne mansion too!

Sounds like more fun to me than being Leonard Cohen! Although he is very handsome and no doubt very talented. I dont look like anyone, Does Dawn French count? And for those in the UK i'm constantly remarked to be Pat Butcher from Eastenders cos i like wild and wacky earrings.:scared:

gurinbasra
03-11-2011, 06:54 AM
Which city is that - you know I live in Calgary!

Gurinder

Geoff
03-11-2011, 08:07 AM
And for those in the UK i'm constantly remarked to be Pat Butcher from Eastenders cos i like wild and wacky earrings.:scared:
Oh No I've got the giggles!!!!!! Apologies for those who cannot receive "Eastenders" (A blessing in disguise) but Sam from now on you can call me RICKEEEEEEEEEEEEEEEEEEEEEEEEE. :lol:

Daggar
03-11-2011, 08:13 AM
Which city is that - you know I live in Calgary!

Gurinder

Marta is in Jasper (heading to Edmonton) -- hope she does well!!

We're in Chestermere (essentially - Calgary)....

freakyschizogirl
03-11-2011, 08:29 AM
Oh No I've got the giggles!!!!!! Apologies for those who cannot receive "Eastenders" (A blessing in disguise) but Sam from now on you can call me RICKEEEEEEEEEEEEEEEEEEEEEEEEE. :lol:

lol. i might call ya Geoffieeeeeeeeee!

marta
03-12-2011, 06:35 AM
Hi Gurinder, yeah I am in Edmonton right now. I've been meaning to get a hold of you and tell you to swing by Jasper if you ever want a getaway from the hustle of Calgary. Just pm me and let me know if you're heading up and you have a place to stay if we don't have anyone booked in the suite (we have a tourist suite in our little iddy biddy house - which is open to any Weggie by the way)

The treatment is over and went off without a hitch. I was a little tired last night, and pretty normal today. Not sure if this might kick me in the butt in a day or so, but so far so good. My poor little misguided B cells have no idea that I set of a Weapon of Mass Destruction on them. The whole thing was pretty uneventful.... the only thing was that my mom sent a lunch with me that weighed more than a newborn baby ( I told her that all the other kids are going to make fun of me at lunch, but that didn't stop her). So next round will be on the 28th (they couldn't get me in 14 days later). I've been having all sorts of dreams of running through the woods at full speed, and doing all sorts of things I use to do before the 'blessed event' so hopefully this is foreshadowing. Bring it on.... my old life that is.:w00t:

DEE
03-12-2011, 06:45 AM
Glad things went well Marta . take things steady. rest and take care of you :hug1::hug3::hug2: DEE x

pberggren1
03-12-2011, 08:36 AM
Good to hear that it went well Marta. Did you get my PM?

freakyschizogirl
03-12-2011, 08:37 AM
Just pm me and let me know if you're heading up and you have a place to stay if we don't have anyone booked in the suite (we have a tourist suite in our little iddy biddy house - which is open to any Weggie by the way)


I'm packing my bags now Marta!
Glad your treatment went without a hitch! :thumbsup:

Daggar
03-12-2011, 08:42 AM
Good to hear you're doing well Marta! Keep us posted...

NicShaf
03-12-2011, 08:47 AM
Glad to hear everything went well...hope more good news follows.

drz
03-12-2011, 09:00 AM
Hi Gurinder, yeah I am in Edmonton right now. I've been meaning to get a hold of you and tell you to swing by Jasper if you ever want a getaway from the hustle of Calgary. Just pm me and let me know if you're heading up and you have a place to stay if we don't have anyone booked in the suite (we have a tourist suite in our little iddy biddy house - which is open to any Weggie by the way)

The treatment is over and went off without a hitch. I was a little tired last night, and pretty normal today. Not sure if this might kick me in the butt in a day or so, but so far so good. My poor little misguided B cells have no idea that I set of a Weapon of Mass Destruction on them. The whole thing was pretty uneventful.... the only thing was that my mom sent a lunch with me that weighed more than a newborn baby ( I told her that all the other kids are going to make fun of me at lunch, but that didn't stop her). So next round will be on the 28th (they couldn't get me in 14 days later). I've been having all sorts of dreams of running through the woods at full speed, and doing all sorts of things I use to do before the 'blessed event' so hopefully this is foreshadowing. Bring it on.... my old life that is.:w00t:

Maybe you could invite Leonard to do a special concert for Weggies!:wink1:
How are you feeling after getting some rest?

Hammy8241
03-12-2011, 09:26 AM
Maybe you could invite Leonard to do a special concert for Weggies!:wink1:


Please No.:w00t: I'm sure that Mr Cohen 's music is sponsored by the makers of Prozac - The Samaritans haven't got enough people to answer the phone after listening to him!:sad:

No, not you Jack!

Good to see your back Marta.

marta
03-12-2011, 03:55 PM
Thanks my wonderful extended family. Phil, got your pm, but haven't been on the computer long enough to answer. I'm with Hana in the city, Brian went back to Jasper today. I'm feeling a little tired right now, but I imagine there's a bit of a battle going on inside my already wrecked body.

If Leonard did a special concert for us, I'd pee my Weggie panties (am I allowed to say that word here? ha ha) prozac or no prozac. I love that suave dude. You as well Jack.

Hammy, love your signature this week. I can think of a slinky or two myself.

I haven't forgotten about posting the outline for the book. Hana is going to her first circus tomorrow (although she'll feel right at home I'm sure) and I'll try and do it then. Good night y'all.

Sangye
03-13-2011, 03:12 AM
Yay for finishing your first infusion, Marta! Glad it went well.

One note about scheduling: Make sure you schedule both infusions before starting the first so you can get them spaced properly. The JHU infusion center is adamant about doing rtx right on schedule.

me2
03-13-2011, 03:55 AM
I'm glad you mentioned that the infusions be spaced properly Sangye. I was got my first one on the fourth and the second one is due on the 18th. I was thinking about changing the day- now I won't. The space between doses is 14 days. I hope that is the right idea.
First one went ok. Felt sick a couple of days but nothing like gettiing Cytoxan.
I'm going to be curious if the second one isn't maybe a little easier. Fewer B cells to kick around maybe?

Sangye
03-13-2011, 04:01 AM
That's great, me2. I have no idea if your next infusion will be easier. I hope so!

marta
03-13-2011, 07:38 AM
Yeah me2 :hug3:. I'm quite surprised at how insignificant the effect of the infusion was and the aftereffects. Just a little extra tired but nothing more than that. My colour seems to change by the end of the day, but I've been Johny Technicolour for the last 11 months so that's nothing new.

I asked about the 18 days vs 14 days, and the nurses all said that a few days on either end is not significant. I will try to call just before the two week mark and see if anyone has cancelled but since it's a full day affair, chances are slim according to the nurses that run the place. They did the best they could to get me in as soon as possible and still get me appointments properly spaced enough that it will be successful. I much rather have it now than a month or more from now. I was chomping at the bit to get off the cyclophosphamide and start my new life.

Jack
07-02-2011, 12:46 AM
Update: My story - my daughter has now dug out the old photos of me which she finds very amusing, but it does mean that I can scan a pre Wegener's picture of myself to complete my story. Where do we go from here? Has anyone else completed their story?

Brooke
07-02-2011, 01:43 AM
I have not done my story yet, I apologize. Do we have a date/time that it needs to be completed?
Would it be possible to get the link sent to me again? I can search it on here too.
Thanks.

marta
07-02-2011, 02:06 AM
Jack, I love you. Can't wait to get the picture. I'll also send you a link to one more thing in the next couple of days.

Brooke, I've finally put the outline on my blog if you want to pick it up from there: Weggies Unite: The Book (http://weggiesunite.blogspot.com/p/book.html).

I haven't put a timeline on it, I was initially thinking this spring, but things got away on my and I've fallen behind 'a little' - I have a feeling though that the momentum will get going again. I'll fire off some emails to the people who have the outline already.

Thanks y'all.

marta not so smarta

Kami
07-02-2011, 03:25 AM
I will start working on mine July 12th and see if I have anything to offer. I looked thru it and it looks interesting enough I just haven't had time to concentrate on it. My daughter just graduated from high school so I have been going to millions (or though it seems) graduation parties and also working on getting ready for hers which is July 9th. She is also an ambassador for our town so we have been going to one parade or event after another. It is fun but I am glad her reign will be over on July 18th. I also have been in a flare since March that ins't in control yet so have had less energy and all that fun stuff. It is kind of nice to say that and know that you all understand what I mean. Its hard running around to all of this stuff with moms that are all younger than me and don't have a "disorder" and don't understand how your body is against you!! :) Sorry I really got off subject!! The book is interesting and I will start working on it shortly!! WHen my daughter was born she was a premie and the hospital reccomended a book for me and I tell you it was the best thing ever! It really helped me thru a very scary time in my life. When I was dx with Wegeners I so wished someone would have handed me a book for that, so I am really happy that someone is working on one and happy to be a part of it. Thank you!

aewaustin
07-02-2011, 04:36 AM
I will work on this... Now have a document on my computer with the outline (very helpful) so that is a start! Thanks for organizing this as it will be really cool once it is done :)

pberggren1
07-02-2011, 09:03 AM
I have decided to not start mine until at least November. By then I should be off all antibiotics and down to around 5mg of pred.

sadpixie
07-02-2011, 09:28 AM
I will start working on this asap!

Jack
07-02-2011, 06:16 PM
I have decided to not start mine until at least November. By then I should be off all antibiotics and down to around 5mg of pred.
The future is impossible to predict, you have to work with what you have now when you have Wegs. Things are never so bad that they can't get worse! :wink1:

Sangye
07-03-2011, 12:53 AM
That is great advice, Jack. :thumbsup:

pberggren1
07-03-2011, 05:55 AM
I'm now about half done.

GARYfromBOSTON
08-04-2011, 05:11 AM
When are you going to press? (When would a submission need to be in by?)

Natalie
08-04-2011, 07:31 AM
I will give it a go Marta I will check it out on your Blog now but if there is a sheet you could email me that would be great too :) cheers .. Nat

marta
11-19-2011, 04:12 PM
Hey Gang,

Since I went on the boob tube, I've had a bunch of new people interested in submitting. I am starting to do the layout and this is just a reminder that it's still a go. Gary, when I started this I was way over-ambitious and wanted it done by the following spring, however being a Weggie has taught me some lessons in realistic expectations and deadline setting.... so I currently don't have a deadline (avoid dissapointment that way) but like I said, I'm collecting stories and starting to lay them out. I will give a yellow and then a red card alert before pulling the plug but thought I should give another heads up.

Nat, I'll send you a Word Doc when I get home to my computer. I don't have one here at my folks' house. It's exactly the same as what I have on the blog though. We just got published in a medical journal with our survey, now lets get published in our own book.

maria garcia
11-19-2011, 05:19 PM
Hi Marta welcome back you have been missed. I was reading your blog and I m not sure I read how you are doing now. Are you in remmision? Are you taking any meds? Your one of the wise ones in his forum but gentle with words.

marta
11-20-2011, 05:33 AM
Hi Maria Garcia, I'm doing much better thanks. I am still on 150mg Imuran, 8mg pred, and I just came into the city to see about another RTX shot as I'm feeling things start to show themselves. I want to nip it in the bud before I have to go up on the pred and feel like I'm starting from scratch. I've been super busy, work, kindergarten pick ups and droop offs, and home and there isn't much time left to go on the computer so I've been trying to fit everything in unsuccessfully.

Thanks for the compliment, but I wouldn't go as far as wise nor gentle with words. I tend to be a hot head sometimes and not think thouroughly before typing. I know I have made some people mad, but I can't change the past and when I have a rant it's usually coming from a good place (trying to stick up for a person or an idea that I believe is for the best of the majority or the underdog). I really do think about everyone on here a lot and feel like I have made some amazing connections with some amazing people on this forum. I think you/we are all fighters to the n-th degree, and this Wegener's excercise is building stronger, gentler, kinder, wiser human beings.... i.e. 'prettier' on the inside to compensate for what's going on on the outside.

A friend who has lyme disease asked me the other day how I deal with the feelings of depression. I thought about it and realized how lucky I have been thus far from that perspective. Then I wondered why. I think it's because I try and keep my little brain busy with the book, the forum, the Weggie merchandise, the survey... just keeping my brain going. And there are so many people on this forum that have channeled the negative from the disease experience into a positive of helping others. So there. That's my story and I'm sticking to it

My mom and sister just came in and I will now log off.... besides my sister is rubbing my back as type, so how good is that?

Peace out my friends.

marta

Palmyra
11-20-2011, 06:00 AM
Hola Marta, from way down South (Texas, in the USA)...
I saw your bit on U-tube, and it was very, very good by the way. Your words were articulate and well formed, so this is merely a message to offer encouragement for your efforts. Your advice about channeling one's efforts into helping others as a means of warding off negative emotions, is good food for thought. Thank you for all you do!

Jane (aka Palmyra, mom of Alison..diagnosed 2006 and doing well)

jola57
11-21-2011, 03:45 PM
Marta, I am envious, I want my back massaged too. You can never make anynone mad, we can all have different ideas. It is that we are all a big family that listens, shares and cries together and never, ever gets realy upset with each other. We've all been there.