From undiagnosed to climbing Mt. Everest!

[Cindy]

I have a meeting with his producer in the morning and will have a better idea how this will go. Just heard that NORD got the senate to designate Feb 28th as National Rare Disease Day :)

[drz]

I have a meeting with his producer in the morning and will have a better idea how this will go. Just heard that NORD got the senate to designate Feb 28th as National Rare Disease Day :)
So what can we do to promote this?

[Cindy]

I will post the time and links tomorrow. Take Care.

[me2]

February 28 will be my Household 'Go Cindy!!' day. I will try and listen to you on Dennis Miller.

[Cindy]

If you click on this link, it will take you to NORD's webpage. Then look to the box on the right and if you click the link, $1 will be donated to NORD's general research fund.

Rare Disease Day USA | Alone we are Rare. Together we are Strong. (http://rarediseaseday.us/)

[chrisTIn@]

Thanks for posting this Cindy. I didn't know that Europe has its own rare disease organisation Eurordis.
I 'm going to read all this information soon.

Wish you the best of luck with your efforts for rare disease day in the USA!:thumbup:

[Geoff]

Wishing you all the very best for Monday Cindy. I am sure you will do us proud!! :thumbsup:

[Cindy]

On Monday, February 28th at 7:30 AM (Pacific Time) I will be interviewed live on The Dennis Miller Show. To listen to it on the radio go to his website and find your local radio channel and air-time by selecting "Radio Channel Finder." Or you can listen to it live on your computer by clicking the Dennis Miller Show link shown below, once on his homepage click the “Listen Live Now”

The Official Home of Dennis Miller On The Web (http://www.dennismillerradio.com/)

Please remember that I will be talking about Rare Diseases but Dennis is very interested in my Everest climb and it's his show. So, I will get out what I can while still talking about "why" he asked me on the show. I was lucky that he agreed to do the interview on Rare Disease Day :)

[DEE]

Good luck for Monday Cindy DEEx

[me2]

Just to get to say a couple of words and make a connection is fantastic. Of course you have to give him the interview he wants with the emphasis where he wants - I will be very interested to hear about your climb and what questions he will have for you.

"So Dennis, Mr Miller, aside from climbing the tallest mountain on the planet, or having my own talk show, do you have any suggestions for me as to how I could raise more awareness about the need for treatment of rare diseases? Maybe something involving frogs and rockets?"

[pberggren1]

Just to get to say a couple of words and make a connection is fantastic. Of course you have to give him the interview he wants with the emphasis where he wants - I will be very interested to hear about your climb and what questions he will have for you.

"So Dennis, Mr Miller, aside from climbing the tallest mountain on the planet, or having my own talk show, do you have any suggestions for me as to how I could raise more awareness about the need for treatment of rare diseases? Maybe something involving frogs and rockets?"

I think this should be on the Funny Stuff thread.

[Deanne Hull]

Dear Cindy, love your story and your passion. You go Girl!

[Cindy]

me2: okay you got me on the "frogs and rockets?" :) And I was specically asked not to call him Mr. Miller:)

What I did was send his producer an outline of what and how I wanted to combine both issues and I have two things I will try and get into the interview that would help my efforts to continue to raise awareness and money.

[marta]

You go Cindy,

Have fun and let it unfold as it will. You've overcome way crazier things than Dennis Miller... also thanks for the link. Good stuff. I mentioned it to a friend of mine, and his reply was "Alone we are rare, together we are common." ha ha. Have an awesome day tomorrow.

[Cindy]

Here is the link to the Dennis Miller interview - and as crazy as it was - I think it worked! What do you think?

http://www.dennismillerradio.com/b/From-the-Highest-Summit-to-the-Deepest-Depths/-745037379416556555.html//

[drz]

Here is the link to the Dennis Miller interview - and as crazy as it was - I think it worked! What do you think?

http://www.dennismillerradio.com/b/From-the-Highest-Summit-to-the-Deepest-Depths/-745037379416556555.html (http://www.wegeners-granulomatosis.com/forum/redir.aspx?C=f8d2adbf2cb3481582a001d70d3bdba1&URL=http%3a%2f%2fwww.dennismillerradio.com%2fb%2fF rom-the-Highest-Summit-to-the-Deepest-Depths%2f-745037379416556555.html)
Can you double check the link as i can't find page! Found the link after I googled it. The pix are great and the promotion of NORD should help.

The audio link is under the pix of Everest with poster of NORD displayed. Worth a listen.

Good job for the publicity. You are right we can't believe some one with Wegener's can climb Everest since many of us can't make to the back side of Walmart.

[Cindy]

Okay, I fixed it.

[drz]

From the Highest Summit to the Deepest Depths
February 28, 2011
Posted by SarahDMZ

Californian Cindy Abbott, represents patients with Wegener’s Granulomatosis and is raising awareness for the Vasculitis Foundation, as well as for all people affected by rare diseases.

This year, Cindy will be plunging the depths of the ocean during a deep-sea dive for Rare Disease Day 2011 with NORD, the National Organization of Rare Diseases (http://rarediseaseday.us/). Hear her uplifting story below.

http://images.dennismillerradio.com/images/guests/CindyAbbot1.jpg

For more information on Rare Disease Day 2011, please visit NORD's website at http://rarediseaseday.us/ (http://images.dennismillerradio.com/images/guests/CindyAbbot1.jpg).


As a part of last year's Rare Disease Day, Cindy climbed to the top of mount Mt. Everest. You can see a smattering of shots here (http://www.dennismillerradio.com/b/PICS:-Cindys-Climb/-470618388293394771.html) and also check out the amazing story at her website: Reaching Beyond the Clouds (http://reachingbeyondtheclouds.com/).

http://images.dennismillerradio.com/images/guests/EverestSmall.jpg
Cindy Abbott shows her Rare Disease Day flag at the summit of Mt. Everest




http://images.dennismillerradio.com/images/icons/downloadicon.gif (http://www.dennismillerradio.com/membership) Download This Clip (http://www.dennismillerradio.com/membership) http://s7.addthis.com/static/btn/v2/lg-addthis-en.gif (http://addthis.com/bookmark.php?v=250&username=dennismillershow)

[drz]

Okay, I fixed it.

Yep, you did it!

[ArlaMo]

Amazing, Cindy! I get out of breath going up the stairs!

Great interview - I posted the link to it on my FB as well.

[elephant]

Great job! Thanks for your hard work!

[Daggar]

Great job!! You mentioned that you believe you had the disease for 14 years before diagnosis? What was the first sign of the disease in the early stages? Have you ever had organ involvement (kidneys)?

[marta]

Nice Cindy! Very well put. Looking forward to watching you on Survivor.

[chrisTIn@]

Hey Cindy! I just listened to the interview and I think you did a wonderfull job!
Great!! :thumbsup:

[Cindy]

Great job!! You mentioned that you believe you had the disease for 14 years before diagnosis? What was the first sign of the disease in the early stages? Have you ever had organ involvement (kidneys)?

Thanks! Yes, 14 years! My first sign was vision lose and then MS type stuff which led to that misdiagnosis then sinus surgery etc... but no one put the pieces together. Had blood in urine but was with an HMO and that didn't go far. Thankfully I do not have kidney involvement.

[Cindy]

Rare Disease Day USA 2011 was a great success!

This was just released from NORD: Since 2012 will be a leap year, Rare Disease Day 2012 will be bigger and better than ever. And, keep sharing the message throughout the year: ALONE WE ARE RARE. TOGETHER WE ARE STRONG.

So, now where can I take the Rare Disease Day Banner next year? Any ideas?


845

[Daggar]

Ha Ha!! Motivated...

Let me think -- how about surviving a Canadian winter!! LOL :w00t:

If anything like the current one we're having it may be a challenge!

[Cindy]

No way, I hate the cold!

[Sangye]

How about a walk and/or bike across America? I have no idea how long that would take, though.

[Cindy]

Interesting idea! Maybe I could connect it with a speaking tour. One problem: I am afriad to ride bikes - scared of falling - no joke. I like to stay on my feet and walking would take years.

[Sangye]

How about one of those recumbent 3-wheeled bikes? Maybe you could ride for large stretches and then walk once you get closer to cities where you have speaking engagements.

Also, how about doing all the major hiking trails, like rim-to-rim Grand Canyon, Appalachian Trail, etc...

[Psyborg]

Interesting idea! Maybe I could connect it with a speaking tour. One problem: I am afriad to ride bikes - scared of falling - no joke. I like to stay on my feet and walking would take years.

I'm ok with bikes...but climbing a mountain sounds scary to me :thumbsup::crying:

[vdub]

Train for the Iditarod, Cindy! Or the Yukon Quest.... Iditarod would be better, tho....

[pberggren1]

What is Iditarod?

[vdub]

Famous dog sled race in Alaska. Goes from Anchorage to Nome (1,200 miles).

Now that I think about it, it begins this Saturday (1st Saturday of March). Really a grueling race. Just completing it is a major triumph.

The Official Site of the Iditarod (http://www.iditarod.com/)

[Barbara H]

Your story is amazing! Thats what I call coping with your illness. I am 65 years old, and my exercise consists of about 3 visits per week to the swimming pool, and strolls around the country park with our old decrepid dog. My walking is pretty poor, but I have to keep stoppng to wait for him!
I take regular exercise at my own level, but I think I will reserve climbing Everest till my next re-incarnation. lol

[drz]

Interesting idea! Maybe I could connect it with a speaking tour. One problem: I am afriad to ride bikes - scared of falling - no joke. I like to stay on my feet and walking would take years.

A recumbent three wheeler bike would work for you then. You are close to ground and can't fall.

[jola57]

Cindi, terrific interview. thanks again for taking this disease up front and recognizable

[Cindy]

Train for the Iditarod, Cindy! Or the Yukon Quest.... Iditarod would be better, tho....

I love the idea of the Iditarod, but I could never used dogs like that - I would have to use people to pull the sled.

What is the Yukon Quest?

[marta]

How about duplicating the Y2Y hike? That sounds right up your alley... pardon the pun.

Yellowstone to Yukon Hike - Route Information (http://www.necessaryjourneys.ca/y2yhike/old/route/default.htm)

[me2]

Your interview was great Cindy. Thanks. How about having a team of tough Autoimmune people like yourself go around the Iditarod course after the 'big' race pulling a dog on the sled? It would certainly get some attention. Perhaps a cruel use of sick people... but feed them salmon and don't yell at them.

[Sangye]

ROTFL :lol:

[Cindy]

Your interview was great Cindy. Thanks. How about having a team of tough Autoimmune people like yourself go around the Iditarod course after the 'big' race pulling a dog on the sled? It would certainly get some attention. Perhaps a cruel use of sick people... but feed them salmon and don't yell at them.

me2, okay now we're on to something!!!! I like the idea of the Iditarod but poeple lose interest after it is completed - so, how about a team of rare diesase team completing (special rules to switch-out drivers) - but I still have a problem using dogs that way.

[Daggar]

How about you run a snow machine pulling a sleigh with the dog team on the sleigh along the same trail they use for the Iditarod? Kind of raising two banners at once --- rare disease/animal rights....

Make sure the snow machine's a Polaris>>>> haha!!:thumbsup:

But remember Cindy -- it's COLD!!!! :ohmy:

[Cindy]

NICE! I like it. And I still have my down suit!

Question: Do snow machines go across those frozen lakes?

And, did someone say the Iditarod started March 1st? If yes, thts's the day after Rare Disease Day!!!!!!

We might be on to something! Everything starts with a idea! Or in the case of climbing Everest - a TV show :)

Wait until my husband hears about this - nope, I better not say anything. The poor man never realized what he said "I Do" to 20 years ago :)

[Daggar]

Too funny... priceless!! Just don't mention to hubbie that I had anything to do with the idea!!

Yes, the snow machines will do the trek - they have safety crews on sleds to monitor the trail during the event.

The catch would be getting the dogs to stay put -- they are very "hyper-active".... you could always hire a bunch of "english bulldogs" wearing fur coats. They are probably the easiset going breed but I don't think they'd take well to the cold! :wink:

[Cindy]

Just checked out the Iditarod website. So it started this year on March 5th and lasts 10 days and covers 1132 miles. The entry fee is $4000 and registertion begins late-June.

I have spent about two hours mushing in Alaska at an Iditirod dog-training camp and the dogs are more then hyper-active! However, there was one dog on my team that was in the race three times. She was mellow and laid back while not racing. So, I could get someone to loan me a "retired" team (smaller than normal) so it would still be in the "spirit" of the race!!!

The trick would be to connect the media and race board (sometime in April/May) and see if a "modified musher team" would be allowed just for the goal of raising rare disease awareness. I think trying to make any statement about the dogs would be in poor form and not recieved well - at all!

I'm liking this more and more :)

Daggar, you live up there? And know a lot about this race? Connections?

[Daggar]

Sorry Cindy -- I didn't realize you were taking this seriously! I guess you are... I can hear your husband yelling in the background!!!:sad:

No, I spent most of my teen years in "north, north Ontario, Canada" some northern Canadians consider Alaska the 14th province/territory -- especially the weather and way of life....

I'm afraid you would have to avoid the "animal rights" issue... that would not fly well up there at all!! Besides, you wouldn't want Sarah knocking at your door -- I hear she's quite a good shot!:scared:

But if you are serious I'd bet that they'd be more than happy to draw attention to the "rare disease" issue while gaining some positive media attention for a change.

I'd also bet money that you'd get some sponsorship success from one of the major sled companies -- ie Polaris, Ski-Doo, Arctic Cat or Yamaha.... they are soooooo competitive it'd be a great platform for them to push their product (sled & gear).

If you do decide this is the direction you want to head .... I'm sure we can come up with some way for us to help.

[Cindy]

Not telling hubby yet, but I believe I am going to check into this! I watched last year's TV coverage of the race and it looks tough, but Everest was suppose to be impossible - or so I was told :)

As soon as this year's race and events are competed, I will start making inquiries.

So, Daggar - THANKS for the IDEA!!!!!

[Cindy]

Just got off the phone with the Iditarod Race Headquarters. Now I know who to connect as soon as this year's race is over :)

Does anyone have any connections in the sport of mushing?

[drz]

Just got off the phone with the Iditarod Race Headquarters. Now I know who to connect as soon as this year's race is over :)

Does anyone have any connections in the sport of mushing?

I think the drivers come from all over and there might be one near you who has raced. Some times the dog owners have more than one team and maybe you can convince some one to let you drive one of their second or training teams. Especially if you volunteer to go help them train a team. I hear from people who have raced dogs in shorter and smaller races that training their dogs to race is very arduous and takes a lot of time. The Iditarod is like the Mt Everest of dog sled racing I guess so it might be a good fit for you.

[Palmyra]

Hey Cindy,
I just got a message from a friend in Alaska....He is looking for some contact information on a couple of the racers that he knows. He warns that these folks are full of 'character' shall we say! Sounds like a great venue for a bit of publicity and adventure.

More details as they come. Cheers!

[Cindy]

Hi Palmyra,

Thanks for the help :) And I know what he means by "character" I have spent a little time in Alaska.

[vdub]

Dang, Cindy! I haven't checked back on the board and for some reason I missed all of the replies after I mentioned the Iditarod. Sorry....

The Yukon Quest doesn't get the same notariety, so the Iditarod would be the best. The Iditarod starts on the first Saturday of March. It begins in Anchorage, but only for the cameras. The real start of the race is in Willow on Sunday.

One of the vetran mushers trains in my hometown. He is running again this year. I don't know how many dogs he has or if he has a "spare" team, but he might. It's very expensive to have a top notch team.

And, don't worry about the how the dogs are treated. They are athletes, they love to run, they are pampered all year, and they have some of the best vet care anyone could give them. Send me an e-m or give me a call and we can talk about this some more.

[Palmyra]

I am all smiles and want to be on board if you pull this venture off. I am afraid the mushers are in as dire a need of funding as any Vasculits rep may be, but I would pay my own way to even witness the adventure. I think it could be a very good window of opportunity. More later as I hear of any connections to be made.

Palmyra (my favorite ski mountain in CO) Cheers!

[vdub]

The Iditarod is a really, really tough race. Almost 1200 miles. {current standings (http://www.iditarod.com/race/race/currentstandings.html)} {route (http://www.iditarod.com/race/route.html)} Any team that finishes has to be admired. Even those who start and scratch (7 so far this year) deserve your respect for having tried.

[vdub]

Soooo, Cindy! Here's a thought. Remember I said that the race started in Anchorage on Saturday for cameras, but then the real start was in Willow on Sunday. Do the stretch from Anchorage to Willow for the publicity and then we could help sponser a pro team to carry the flag on to Nome.

Or maybe a bunch of us could help man the check points along the way. That would be a kick, but I'll bet they have volunteers lining up around the block....

[Sangye]

I love the idea of doing the more publicized stretch, vdub.

[Cindy]

Vdub, Since you mentioned this I have been following the race, read every rule, entrance qualification, racing and dogs handling details, etc..... I have always been fascinated by this race, as I still am with Everest. I have called and talked with race headquarters and I will call the race director a few days after the lead teams come in. My plan, howver, is to actually run in the race. I would need a mentor musher and the loan of a team. I have lots of time during the summer to go up and learn the handling of dogs and mushing skills and I have a school break in Dec-Jan to compete in the qualifying races. But I would have to find a big sponsor. And there are some timing issues with "qualifing races and the application deadline etc. . .

The Iditarod is taking a lot of "animal rights" heat and with a few monifications in the race (i.e, more manditory rest stops) I believe the race can become greater than it ever was :)

And your idea about Weggie and other with rare diseases volunteering would make it more of a media draw. A win-win situation :)

[Cindy]

Oh, and the timing is almost perfect with Rare Disease Day 2012. It is Feb 29th (Wed) and the public start of the race is the following Saturday. And rookies are required to be there early for meetings, so I - with any WG volunteers would all be up there :)

[drz]

Vdub, Since you mentioned this I have been following the race, read every rule, entrance qualification, racing and dogs handling details, etc..... I have always been fascinated by this race, as I still am with Everest. I have called and talked with race headquarters and I will call the race director a few days after the lead teams come in. My plan, howver, is to actually run in the race. I would need a mentor musher and the loan of a team. I have lots of time during the summer to go up and learn the handling of dogs and mushing skills and I have a school break in Dec-Jan to compete in the qualifying races. But I would have to find a big sponsor. And there are some timing issues with "qualifing races and the application deadline etc. . .

The Iditarod is taking a lot of "animal rights" heat and with a few monifications in the race (i.e, more manditory rest stops) I believe the race can become greater than it ever was :)

And your idea about Weggie and other with rare diseases volunteering would make it more of a media draw. A win-win situation :)

I think one of the big drug companies that we support ought to sponsor you, like makers of Cytoxan, Prednisone, Rituxan etc. We have given them millions.

[vdub]

Cytoxan, Prednisone, Rituxan etc. We have given them millions.
We do indeed give them millions....

[Cindy]

I contacted my drug company and they said no way can our name appear with your disease because it is not an approved treatment :( (And because of that, I do not tell people my names of my drugs)

[Cindy]

I think one of the big drug companies that we support ought to sponsor you, like makers of Cytoxan, Prednisone, Rituxan etc. We have given them millions.

drz, What is the biggest drug company for WG meds? Maybe I can get them to help sponsor an event.

[pberggren1]

I think Baxter is one that makes ctx.

[Sangye]

None of our drugs are FDA-approved for Wegs so I don't know if they'd sponsor an event.

[Cindy]

Hi Sangye,

Yea, I know so I am looking at another approach.

I am checking on Genentech right now. They give out grants to raise disease awareness (and one of their focus is immune diseases/disorders) but their grant deadline is April 1st. Only thing is, I would have to become a non-profit tax organization which takes a lot of paperwork. I should do it anyway because of the speaking I will be doing.

But, I need to make a few calls before I go through that process.

Time - I need more time, but . . . .

The Iditador racers are coming in now. Many have finished and more are headed in over the next few days.

Current Standings (http://www.iditarod.com/race/race/currentstandings.html)

[Sangye]

Genentech might be a good one. Dr Seo asked me a few months ago if I'd be interested in participating in a marketing thing for them since rtx has worked so well for me.

[Cindy]

Yea, I just heard back from their grant department and they are supporting vasculitis awareness/education.

AND I am glad to hear it is working so well for you :))))))))) Have you been out to walk your dogs?

[Sangye]

No, I'm still not able to walk my dogs! The rtx got me into remission last year and within a couple weeks I got that severe vertigo and hearing loss mess. Between the vertigo and problems with the pred, I was down for the next 7 months. Then the Wegs kicked in again, then the rtx took me out for 6 weeks....

This is now 6 weeks after starting the current round of rtx and I'm just starting to feel a bit better. Hoping I can start walking them before it gets too hot.

[drz]

drz, What is the biggest drug company for WG meds? Maybe I can get them to help sponsor an event.

I would ask the vasculitis foundation. They might also help in some way.

[Cindy]

Sangye, I may have climbed Everest but my hat's off to you!

I hope I never give the wrong impression because I do not talk about my "issues" much. I figure we all have a purpose and mine is to stand on mounatins or whatever I can do to get attention for awareness. In the book I am almost finished with - I DO talk about my personal story. Before all this started I was such a private person and to to go "public" was very difficult for me. But, it seems to be working out.

[Sangye]

LOL Just getting around every day is my Everest. I hope I can get some of my strength back in the next few months. I think there are so many ways to help others with Wegs that everyone can do something. If we each use the skills and strengths we have, we can make a difference for others.

[Daggar]

Hey Cindy...

I wouldn't close the door on Baxter completely ... you may have to hit it from a different angle. I'm not 100% sure but I believe cyclophosphamide is approved for use in children with nephritic conditions -- Wegener's should definitely fit into that category. I'll do some more research....

Remember to let us know how we can help!

Have you told "L" your plans yet? :wink:

[Cindy]

Daggar - See what you can find out - that would be great.

What I am trying to do is to see if these companies will support a general rare disease awareness campaign. I talked with Genentech yesterday and I have to become a 503 c IRS non-profit foundation to apply for their grant. It's a lot of work so I still thinking about it. Time is one thing I don't have right now.

Almost all the racers are in now and the director should be back in her office next week, so I plan to call her and run this by her. The first thing I need is an extension on meeting the prequalifying races. Then I need a mentor-musher and the use of his/her dogs.

Also, a fellow Weggie has connected with someone up in Alaska that is "connected" and may be able to offer some guidance and etc... I should be talking with him this weekend.

At the same time I am trying to work out the hundreds of details surrounding the event (i.e, training, travel, time, money, equipment etc...) It is a massive undertaking BUT if it works out - I think it would be a major media opportunity AND we can get a lot of rare disease people involved - including children :)

My poor little brain is full, but I never give up!

And I have given Larry small hints that I am working on something, but he doesn't know what.

Any help anyone can give to this "event" is welcome. And by next week I should have a much clearer idea as to what it will take to make it happen.

[Daggar]

Interesting link for the Iditarod and "disease" link....

Lance Mackey Iditarod Champion (http://www.mackeyscomebackkennel.com/)

[Palmyra]

Daggar/Cindy...giving up simply not an option. I like this idea too much. I really like the fact that Lance Mackey is a survivor of a life threatening disease himself, and is a proud witness to survival. This race is not for whimps, so I think it a wonderful adaptation to rare disease....also, not for whimps!

Looking forward to more events to unfold.

[Cindy]

Okay, told Larry this morning and he is trying to digest the whole thing.

I have looked into Lance Mackey and his story. It seems as if we are of "like mind" regarding our attitude on life.

[Daggar]

wow... this is probably what got me so frustrated today!

I'm awaiting response from an FDA rep as to why these drugs are approved in children with "Nephrotic Syndrome" (their description -- Nephrotic syndrome is a set of signs or symptoms that may point to kidney problems).

Wegener's Granulomatosis is causing Nephrotic Syndrome in Holly but it isn't approved for WG.... I'm totally confused now!!!:confused1:

[Cindy]

Daggar,

You can contact NORD or the Vasculitis Foundation about this. They are experts in this area.
Disease Information from NORD, National Organization for Rare Disorders, Inc. (http://www.rarediseases.org/programs/medication)

Contact VF | Vasculitis Foundation (http://www.vasculitisfoundation.org/contactvf)

[Daggar]

Thanks Cindy -- I like his attitude as well.... the doctors can give you all the information you need to make informed decisions but in the end it is "your" decision.

I'm looking forward to hearing what you come up with! The "caregiver" part of me can understand Larry's trepidations if he has them but it sounds like this idea has a firm grip on you!

I'll keep you posted on the FDA approval questions.

[Sangye]

wow... this is probably what got me so frustrated today!

I'm awaiting response from an FDA rep as to why these drugs are approved in children with "Nephrotic Syndrome" (their description -- Nephrotic syndrome is a set of signs or symptoms that may point to kidney problems).

Wegener's Granulomatosis is causing Nephrotic Syndrome in Holly but it isn't approved for WG.... I'm totally confused now!!!:confused1:
Maybe it's because not everyone with Wegs has kidney problems.

[Cindy]

Just heard from Lance Mackey but no details yet.

Daggar helped me put together a great cover for a packet I have to send the race director. I will try to post it - nope didn't work. Daggar, I bet you can get it on :)

Palmyra is also helping me with great ideas and finding sponsors.

Have to run but will post later.

[Daggar]

I'm not too sure about size restrictions on here but this'll be a thumbnail view of the cover....

913

[Cindy]

Just released from the Vasculitis Foundation: Chef Appleman is completing on the Food Network Show and if he wins, he will donate $50,000 for research to the Kawasaki Disease Foundation (a form of vasculitis). You can vote 10 times each day!!!!
Chopped Fan Vote : Shows : Food Network (http://www.foodnetwork.com/chopped-fan-vote/package/index.html)

[Daggar]

Let's go..... 10X's a day....

We need to catch that "Dinner Impossible" fellow...... he seems to be running away with it.

[drz]

Just released from the Vasculitis Foundation: Chef Appleman is completing on the Food Network Show and if he wins, he will donate $50,000 for research to the Kawasaki Disease Foundation (a form of vasculitis). You can vote 10 times each day!!!!
Chopped Fan Vote : Shows : Food Network (http://www.foodnetwork.com/chopped-fan-vote/package/index.html)

I voted for him today, but he needs more help as he is only in fifth place.

[Cindy]

Keep voting - he is in third place now!

[vdub]

Going to have to be a long haul to get from 6% to over 34%, but a determined effort should do the trick....

[delorisdoe]

maybe make a post seperately for this and then others will know to vote as well...also im thinking you can vote from different ip addresses.

[Daggar]

I've discovered that you can vote from different computers..... I use the 4 in the office - and 3 laptops.... works!!

Cindy - I just started a new thread in case some folks are missing it in this thread.....

[Cindy]

Thanks for the info - I'll do the same :) and thanks for moving it!

The VF is looking at ways to help with the mushing event and the packets should have arrived today - I haven't had time to check. With a tax business, Larry and I are on the run all day and into the night BUT less than 3 weeks to go!

[Daggar]

How's the foot?

[pberggren1]

It's 12 inches long.

[Daggar]

uuuhhhmmmm.... no... not going there.... :lol:

[Cindy]

Now boys :)

Went to the doctor and he said it's not broken - been there, done that - not fun with WG. Told me it's just a bad sprain but with WG nothing is normal - so I am going to see a specialist next week just in case. Thanks for asking.

[Cindy]

Chef Appleman won!!!!!!!!!!!!!
That's $50,000 for the Kawasaki Disease Foundation.
The Food Network's website said his son has the disease.

Great job everyone :)

[vdub]

Was there a 3rd place award? I was clicking my 10 everyday and it consistently showed 7% for him and 30+% for each of two others. Glad he won, but puzzled....

[Cindy]

I know - me too!?! But the website said he won - there must have been another conponent involved?

[delorisdoe]

Do you think there was two ways to win? Fan vote-that he did not win and a cooking contest that he did win. Survivor always has a fan favorite vote

[Palmyra]

Hey!

Just happy for that $50G payout! And it made us all very aware, did it not? So television is not all for bad....I voted 9,000+:thumbsup: times and bugged the heck out of my friends. Little mind that it may not have contributed to much to his success, but now they all know a bit more about Vasculitis (like, "It exists!").

Heck of a deal if you ask me!

Sweet dreams to all,
Palmyra, (my favorite little mountain in SW, CO)

[Cindy]

delorisdoe, That makes perfect sense! I just don't have time to watch TV during income tax season - but isn't almost over :)

BTW: I was being looked at "closely" for this next Survivor but didn't get selected :( It would have been perfect for both raising awareness and money for the VF at no cost (just time and energy) to compete.

That's when I started looking for something else - and the Iditarod came up. I am waiting for the Race board to approve a time issue and then I can proceed with the idea. Palmyra, Daggar, and vdub have been very helpful. More details as I get them.

PS Lance Mackey has agreed to mentor me - but the cost of everything (dogs, fees, etc...) is shocking! The VF is checking to see if Genentech will issue an vasculitis awareness "event" grant.

16 dogs on a team, 15 vasculitis diseases - so the two lead dogs can be Weggie's and the musher - and we go from there - maybe.

Palmyra, I was wondering about your name :)

[Sangye]

LOL Now we'll really see what the Wegs dog looks like. :wink1:

[drz]

LOL Now we'll really see what the Wegs dog looks like. :wink1:

Lets hope the sled dogs are better behaved!:wink1:

[Palmyra]

Hey Cindy, I am not shy, but I also do not wish to over estimate my contacts. My heart is bigger than my "purse".

You will have a new message coming. Cheers to more advocates regarding this and related conditions. I can think of no greater gift than giving to this community. Is Lance enough for local contacts?

PS...The weg dog is really very attractive :rolleyes1:

[delorisdoe]

I have always wondered if someone with wg could be on survivor. I wondered if they check your medical history and if the lack of food and the bad weather would have an affect on the disease. ???

[Sangye]

I have the same concerns as Leigh. I don't think that putting one's body in a starvation mode is a good idea with Wegs. I think that dog might wake up in a very bad mood!

[Cindy]

I have always wondered if someone with wg could be on survivor. I wondered if they check your medical history and if the lack of food and the bad weather would have an affect on the disease. ???
Great Question (I researched this in great detail before going to Everest)

This was the casting folks biggest question at first, so they sent me the medial forms which stated all the physical and environmental issues involved with being on Suvivor. I tool it up to my WG doc and he sat there thinking and thinking. In his brain he was thinking about what you mention but then he looked up at me and started filling in the medical release form. At the end he wrote" Cindy has already done much more extreme things than this." Survivor would be a walk-in-the-park compared to spending 60 days living at 18000 ft (or higher) in a tent, on a glacier. My body was stressed in ways I couldn't even imagine and I lost more than 10% of my body mass. As soon as I got home, I went to my doctors and everything was the same as before I left - they were amazed! I am very respectful of the power of WG and take great care to make informed decisions regarding the extreme events. And I am very careful to stay on my medication schedule.

It really is too bad this didn't work out - I was so close :( Just think, millions of people would learned about Wegener's Granulomatosis (vasculitis and other rare diseases). I asked them if I won the money if they would pay it directly to the VF but they said no. They would pay me and I would have to pay the taxes and then donate it - but still. AND this would have cost me nothing out of pocket and I wouldn't have had to take time off work and lose income: but I would have to spent 7 weeks away from my family (which is very difficult).



I will be back and reply to Palmyra's post.

[delorisdoe]

that is fantastik. I live my life now the same as i did pre wg. I dont worry about day to day but while i watch survivor i always think that it would be a risk and I am so afraid of cytoxan and prednisone that i dont know if i could bring myself to do it. that and i am to opinionated to survive any reality show. well except for celebrity rehab...those guys can say anything and get away with it.

[Cindy]

Hey Cindy, I am not shy, but I also do not wish to over estimate my contacts. My heart is bigger than my "purse".

You will have a new message coming. Cheers to more advocates regarding this and related conditions. I can think of no greater gift than giving to this community. Is Lance enough for local contacts?

PS...The weg dog is really very attractive :rolleyes1:

Hi Palmyra,

Thanks for your support in this craziness :)

[Cindy]

Just got off the phone with the Race director and she asked that I send 12 more informational packets up to Alaska for the race board to review. And I talked with Tonya Mackey, Lance's wife, about all kinds of racing details. They both seem like very nice people and are interested in helping.

The board will decide on April 30th if they will grant me an exception so I can race in the 2012 Iditarod.

Here is a video of Lance talking about his bout with cancer:
YouTube - Faces of Alaska: Lance Mackey Talks About His Recovery (http://www.youtube.com/watch?feature=player_embedded&v=8ZboesujQ9Y)

Sponsorship: Daggar designed this sponsorship page. I can't attach it but he has arranged the dog team so that each dog can represent an individual with a rare disease. I would have the dogs’ jackets made with that individual’s name and disease. After the race, the dog-jacket will be given to that person’s sponsor.

Media: For the Anchorage start day, we would try to get as many of the individuals to the prestart event. There they can meet the dog that will be racing for them, and get pictures and media coverage with their dogs. Some of these individuals cannot even walk, let alone run – so it is very exciting to have this symbolism – and the media loves this type of event!

Your thoughts?

[pberggren1]

This just seems all too exciting! You must be stoked about this Cindy. It must be awesome to have this kind of energy. I hope you can do the race and raise awareness for Vasculitis and Rare Diseases in general.

[Daggar]

Tough sledding at times... pardon the pun.... but it looks like you're making progress! Let us know when you hear back from the Race Board.... Any luck on the VF front?

[drz]

More info on Mackey. The part on DeeDee Jonrowe and Susan Butcher is rather touching. It seems like the top competitors are cancer victims.

About Lance Mackey ~ Iditarod Musher (http://www.mackeyscomebackkennel.com/About.htm)

[Cindy]

Thanks Phil, but I have to say my energy comes from somewhere within. I have no idea how I do what I do - seriously! I think some of it comes from all those years with bits of me fading and not knowing "why" that when I finally found out, I just had to do something so other people might get diagnosed sooner. But I am very excited :flapper:

Daggar, the VF is checking again with Genentech. At first their contact say "probably not" but they will check further. I find it odd that on Genentech's website they state they are looking to give grants to vasculitis awareness "events" but when aproached by the VF for this "event" they say . . . . . Anyway, we'll see what the final answer is. We sure give them enough business!

[Cindy]

More info on Mackey. The part on DeeDee Jonrowe and Susan Butcher is rather touching. It seems like the top competitors are cancer victims.

About Lance Mackey ~ Iditarod Musher (http://www.mackeyscomebackkennel.com/About.htm)

Totally! If this works - it's will be an amazing connection between the two groups.

[drz]

Totally! If this works - it's will be an amazing connection between the two groups.

And we can take RTX and CTX together!:biggrin:

[Sangye]

I love the idea of the jackets for the dogs. :smile1:

I have given Genentech $100,000 to date. (Ok, not me personally but insurance) In another 4 months I'll give them another $20,000 or $40,000, and every 6 months after that.

[Cindy]

Sangye, The jacket idea was actually Tonya Mackey's and I love it.

Daggar, can you do graphics on cloth?

And that's what I mean about Genentech!!!!!!!! They should gladly step-up and sponsor the whole team! Good PR!

[Daggar]

Yes.... to cloth question.

It sure would be nice to avoid going through the whole "charitable" licensing ordeal if one large company would take on sponsorship. If not, there's got to be a way to include it under an "existing" one through VF or NORD? It would sure make it easier to raise funds....

[Cindy]

Daggar, The VF sent a message to their CPA to ask about running it through their 503c charity status but it is an extremely busy time for tax professionals for the next week. So, maybe we can get an answer after time season.

Genentech is the most obvious big sponsor. Their website states grants are awareness events for both cancer and immune disorders with a new focus on vasculitis. It the perfect connect with the 1925 vacine run into Nome in 1925, Lance and other top musher cancer issues, and a dog team of vasculitis pateints. And the amount we need to run this event Sanyge's insurance has paid several times over, not to mention everyone else. It was sems like they would jump on this event.

[Daggar]

Genentech -- Let's hope so! That would allow you to "focus" on the challenge of the race itself!!

I know this doesn't compare in scope but we've been doing an annual haunted house for the Food Bank at halloween for the past 8-10 years and I couldn't believe the process you have to go through to get a license for a "charitable event". I did find a way around it by having the local Lion's Club join us in running the event and all cash and food donations came under their organization -- That is why I keep coming back to the VF or NORD involvement.....

We did about $10,000 last year and had quite the turnout over the 2 nights... it grows every year. Holly is hesitant to have attention drawn to her for this year's event but I'd sure like to raise awareness for her disease and I know there are a lot of generous people in town so it may help out the VF. That is a "work in progress"!!

[Cindy]

Hi Evereyone,

I'm sure you know that Vasculitis Awareness month is May and the Vasculitis Foundation is having a fund-raising eBay auction but they need stuff to sell.

Here's the link to the list of things they could use: Bid to Stop Vasculitis - Support the VF Online Auction - May 2011 | Vasculitis Foundation (http://www.vasculitisfoundation.org/node/3324)

(I posted this on a new thread in the general topics)

[Cindy]

For Vasculitis Awareness Month I am giving a few presentations. The one last night at REI was great. Not an empty seat.

This is a picture of me trying to explain what vasculitis is to a dolphin but I just don't think he got it :huh:

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[vdub]

Fantastic Cindy! You do good!

You know what we need to do, tho, is close this topic and start a new thread. 38 pages? Actually, we need to do that with quite a few of the topics, IMHO.....

[pberggren1]

I see that the a Jeopardy contestant that is on right now is connected with the Iditarod race. The teacher's tournament is on and he is one of the 3 finalists competing. Today is the last day. I think he will win.

[Sangye]

I think the dolphin understood but was laughing that we have an Awareness month for everything in existence. Look, here's a list: May Observances 2011 (http://www.whathealth.com/awareness/may.html)

My favorite is "May is Correct Posture Month." ROTFL Everybody better stop slouching. You over there... SIT UP STRAIGHT! :lol::lol::lol:

[Cindy]

I think the dolphin understood but was laughing that we have an Awareness month for everything in existence. My favorite is "May is Correct Posture Month." ROTFL Everybody better stop slouching. You over there... SIT UP STRAIGHT! :lol::lol::lol:

Too funny!

BTW: Still waiting on Iditarod waiver :glare:

[Cindy]

Wierdness! As I type this post, one year ago to the minute, I was at over 27,000 ft and on my way to the top of the World! Summited California time at 8:17 PM tonight!

In celebration of this special day, my hubby and I took the VF banner to the summit of Mt. Baldy (10,064 ft). It's a little lower but the best I could do AND this time I got to stand on the summit with my sweety :hug1:

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[pberggren1]

Two beautiful people on a beautiful mountain.

[BrianR]

Wierdness! As I type this post, one year ago to the minute, I was at over 27,000 ft and on my way to the top of the World! Summited California time at 8:17 PM tonight!

In celebration of this special day, my hubby and I took the VF banner to the summit of Mt. Baldy (10,064 ft). It's a little lower but the best I could do AND this time I got to stand on the summit with my sweety :hug1:

1063

Superfantastic!!!

[vdub]

Even wierder! Sixty years ago today at 0025 hours PST, I was born.... Now isn't that special?

A lot of good has come from that climb, not to mention the personal satisfaction. A great achievement whether you have WG or not. Tough climb!

[Sangye]

Gosh, it's hard to believe it's already been a year. And really hard to believe it's already been 60 years, vdub! LOL Hope you both had a good celebration today.

[vdub]

We did! We had a great time! Even both kids called! How about that!

We are in Kansas City, which has one of the absolute best museums we have ever been to. We went to the National WWI Museum. It rivals anything we have ever been too before to include the Smithsonian. I think we spent about 4 hours there and then we took off to city center to try and find the Jack Stack Freight House Rib & Steak restaurant. It took a while, but we finally found it and it was well worth the effort. Marcia had trio-ribs of lamb, pork, and beef and I had prime rib. We have enough left over for two meals – ok, maybe two for Marcia and a snack for me… Good times with a wonderful wife.....

Tomorrow, we travel to Iowa to go see the Glenn Miller Museum....

[pberggren1]

That meal sounds good vdub!

[Cindy]

Happy belated 60th vdub :)

One year ago time check: After 18.5 hrs from Camp 4 to the summit and back to Camp 4, we would just be asleep in our tents. Here's a picture of Camp 4 at 26,100 ft. I had the only single tent because of my suppressed immune system - couldn't take the risk of sleeping with someone else and getting sick.
I have added some new summit climb photos to the picture gallery on my website.
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[vdub]

Yeap, just find a nice patch of rocks to pitch your tent on.... :-)

[Cindy]

Yeap, just find a nice patch of rocks to pitch your tent on.... :-)

I don't know if you realize just how funny that is - now!

[jmmilliorn]

Another VW coincidence. We both had MGAs for first cars. We both love tractors. You were treated for WG at my sister-in-law's hospital in Las Cruces. You love going to Texas on vacation and I love going to WA state. You go to San Antonio--the town where I met and married my wife. We are both about the same age and have WG. AND, you are celebrating your birthday at Jack Stack's. I know the manager there. When he was a student at Purdue, our company, Daydots, gave him a scholarship for culinary school! Small world. I used to live not far from his restaurant, too. Weird or not?

[Cindy]

We both love tractors.

:lol::laugh::lol:

[pberggren1]

Tractors are important. I like the old McCormicks.

[Cindy]

I was raised on a farm and spent many hours standing on the axle cover next to my Gandpa as he drove his tractor.
In fact, some of my favorite childhood memories are from those days: riding with my Grandpa on his tractor :smile1:

[Daggar]

Hey Cindy, maybe you can work a tractor into some form of fundraiser??:wink1:

Happy anniversary.

Happy belated birthday vdub.

"Nothing runs like a Deere!"

[Cindy]

Hey Cindy, maybe you can work a tractor into some form of fundraiser??:wink1:



Hey Daggar, If I can't get the Iditarod going maybe we could organize a Weggie Tractor Challenge :w00t:

[Daggar]

Weggie Tractor Pull.... that sends out a confusing message ... doesn't it??:w00t:

[Daggar]

Is that Larry I hear in the background....

"One should be more careful about "suggestions" because anything is within the realm of plausible when dealing with Cindy!!" :biggrin1:

[Cindy]

How true those words are :thumbsup:

[vdub]

Yeap, nothing runs like a Deere. I believe my JD's are my favorite, however, I also have a Cat, a Ford, and a Cub Cadet....

[pberggren1]

Tell us more about your tractors vdub.

[Cindy]

Tell us more about your tractors vdub.

I'm getting the impression that you guys are on drugs! Get it :flapper:

[pberggren1]

i'm getting the impression that you guys are on drugs! Get it :flapper:

no **** sherlock!

[vdub]

I moved this to prevent googling of the model numbers and stuff as it would then cause a lot of unnecessary hits. So, if anyone wants to these, send a PM and I'll post them.

Besides... This way, golly gee willikers, Cindy won't mock me.... :rolleyes1:

[vdub]

might make for a pleasant distraction
Pleasant distraction from all weggies stuff..... not from your thread of course :-)

[Rini]

Hi Everyone,



Reaching Beyond the Clouds: Mt. Everest


For some time I had been experiencing a variety of unusual physical problems (i.e., in 2003, I had to have sinus surgery). However, the problem that concerned me most was my rapid loss of vision. I went to many medical specialists and had many tests preformed, but the cause of my symptoms remained a mystery. Setting aside the other physical problems, I focused on saving my vision. I believe I can handle just about anything, but I was terrified of going blind. Enter Dr. Holland of Jules Stein Eye Institute at UCLA: An amazing doctor who worked tirelessly to save my deteriorating vision. Dr. Holland diagnosed me with retinal vasculitis.


Very cool! kinda did not know the eye thing was a option. you are so strong and I hope all goes well!

[pberggren1]

Thanks vdub. Those pics are awesome. I thing my dad's first car was a 47 chev. He had a 47 cadillac too. My friends neighbor restores old tractors and cars. I really enjoyed those pics. You are very talented. Hope you appointment in June goes well. I go see the lung doc next month as well.

[Cindy]

Very cool! kinda did not know the eye thing was a option. you are so strong and I hope all goes well!

Thanks Rini, Fortunately or unfortuately I experienced a central rentinal vascular occlusion and I am now functionally blind in that eye - but it led the doctors to my getting me diagnosed. So, it was a fair trade-off.

And because the disease is attacking my eyes, I can never lower my meds - the first thing that will happen is I will lose all my vision. I know things could be a lot worse but . . . .

[Daggar]

Sorry CIndy for going off-topic too!!

Vdub - pretty impressive .... that would take a loooootttttt of time!! The Deere brought back memories of working on the grandparents farm every summer as a kid. They had the old International and Massey Ferguson before they switched to the JD's

How does the MGA differ from an MGB?

Cindy -- has the leg/ankle healed 100%? You don't have to take pred do you?

[Cindy]

The Deere brought back memories of working on the grandparents farm every summer as a kid. Cindy -- has the leg/ankle healed 100%? You don't have to take pred do you?

No problem, I had a bad day yesterday and . . . . but today is better :)

My best memories of my entire childhood are exactly what you mentioned - my Grandpa passed many years ago but I think of him often.

I can't take pred.

And the legs took me to the summit of Baldy Saturday - the ankle cried a little but doc said it's time to work it!

[Rini]

Thanks Rini, Fortunately or unfortuately I experienced a central rentinal vascular occlusion and I am now functionally blind in that eye - but it led the doctors to my getting me diagnosed. So, it was a fair trade-off.

And because the disease is attacking my eyes, I can never lower my meds - the first thing that will happen is I will lose all my vision. I know things could be a lot worse but . . . .

diagnosis do seem to cost a lot...mine was a little less and a little early ( the bottom right 1/3 of my lung (for now, i'm not yet even 20) but it is good to hear the drugs do help ;)

[drz]

No problem, I had a bad day yesterday and . . . . but today is better :)

I can't take pred.

!

What meds do you take then to protect your vision?

[Cindy]

Before I was diagnosed with WG I was told I had rential vascultis and because I can't take systemic Pred, I recieved steriod injections into my eyes. After I was diagnosed, the WG meds controlled the vasculitis. So now I don't take anything specifically for my vision. And so far so good :) I was at Jules Stein Eye Institute last week and there was been no change in my vision since my last check-up.

[Cindy]

I have been working 24/7 at my computer, with my first day off was yesterday, trying to complete the book-publishing process. There are a thousand details. Anyway, with luck, the book should be out in about 3 weeks! Part of the proceeds will go to the VF - once I know what the proceeds will be (self-publishing). NORD and the VF are providing short write-ups about rare diseases and vasculitis which I will included in the book.

Here is the cover (front and back). The photo is me on Everest at 26,000 ft climbing up the Geneva Spur.

What do you think of the cover?

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[jmmilliorn]

Wow! As a former magazine self-publisher, I am very impressed. It looks very professionally done and your cover piques the interest of potential readers. I think you will be quite successful. I will show a copy to my neighbor, Ron Hall. His book, "Same Kind of Different As Me" has made the best seller list and is in negotiation for a movie now. Perhaps he will give you a lead to his publisher. His is also a story of inspiration and overcoming obstacles.


I have been working 24/7 at my computer, with my first day off was yesterday, trying to complete the book-publishing process. There are a thousand details. Anyway, with luck, the book should be out in about 3 weeks! Part of the proceeds will go to the VF - once I know what the proceeds will be (self-publishing). NORD and the VF are providing short write-ups about rare diseases and vasculitis which I will included in the book.

Here is the cover (front and back). The photo is me on Everest at 26,000 ft climbing up the Geneva Spur.

What do you think of the cover?

1265

[drz]

Looks real nice and appealing. Should make a great Christmas gift for us readers here. Of course it will make it hard for people to understand why I can't walk a few blocks if others can climb mountains.


I have been working 24/7 at my computer, with my first day off was yesterday, trying to complete the book-publishing process. There are a thousand details. Anyway, with luck, the book should be out in about 3 weeks! Part of the proceeds will go to the VF - once I know what the proceeds will be (self-publishing). NORD and the VF are providing short write-ups about rare diseases and vasculitis which I will included in the book.

Here is the cover (front and back). The photo is me on Everest at 26,000 ft climbing up the Geneva Spur.

What do you think of the cover?

1265

[Cindy]

Thanks J. Mike and drz!

I have worked so hard on getting this book done! Sometimes I think it is more difficult than climbing Everest :) I cry when I read certain parts - I literally had to relive everything to get it onto paper with the emotions - and that was tough!

drz, In the book I explain that my situation (for reasons even I and my doctors do not understand) is atypical of the WG experience. And I have tried to be informative yet sensitive to this fact. I really do know how lucky I have been.

My hope is to use the combination of the words "Wegener's and Everest" to draw the "average" Joe and Jane's attention - to help raise awareness.

FYI: I do address the name change at the end of the book - because that's when it was announced. I didn't want to go back and rewrite parts.

[vdub]

Very nice! You should be real proud of yourself for pushing on and completing the project. :-)

[elephant]

Looks great Cindy! Glad your getting your story out there!

[Sangye]

It looks good. Great picture. :thumbsup:

[Psyborg]

I think it looks wonderful. I hope you have a lot of success with this :)

[Chris G]

It's beautiful!! Do you have an estimated completion date?

[marta]

Nice Cindy. Looks awesome! The graphic designer part of me loves it (and I work a lot with mountain winter scenes, so it's right up there for twigging an emotional responce in me)
Who are you self publishing with? I have a few self publishers on the go, and another possibility in China for a real publisher, but always want to know more about publishing so we can publish our communal WG book.

[Cindy]

It's beautiful!! Do you have an estimated completion date?

Hi Chris,

Thanks ! We are trying for a release date in about 3-4 weeks. It would be out sooner but I have to wait about 2 weeks for the Kindle eBook to be formatted which can only be done after the paperback is finalized.

[Cindy]

Nice Cindy. Looks awesome! The graphic designer part of me loves it (and I work a lot with mountain winter scenes, so it's right up there for twigging an emotional responce in me)
Who are you self publishing with? I have a few self publishers on the go, and another possibility in China for a real publisher, but always want to know more about publishing so we can publish our communal WG book.

Thanks! I am using Create Space. So far they have been great and I highly recommend them!

Good luck with the China publisher!

[Cindy]

Will the weirdness ever end? Don't say it - that's what's called Wegener's!!!!!!!!!!!!!!!

So yesterday I go for check-up at UCLA and the doctor said "How long has your tongue been black?" I reply, "What?"

Turns out it's a yeast overgrowth that develops from a combination of things: vasculitis can effect the salivary glands and cause dry-month, and long-term use of immunosuppressants.

So I get to use “Nystatin oral suspension” for the next week to see if we can “rebalance” my oral environment :blink:

[pberggren1]

That is interesting Cindy. I have had a white tongue for months now and have been on various antibiotics, pred, and ctx. My mouth is also dry most of the time. What exactly is Nystatin oral suspension?

[Palmyra]

Ohhh Cindy,
Now you are talking my language, and one that I have an advanced degree in! All things oral medicine, so keep me posted privately if you wish. Nystatin oral suspension is good, and is used as a first line treatment for oral fungal infections. I know your character from this forum (very diligent!), so to be ultra compliant, when you 'swish and swallow,' turn your head upside down a bit, to allow some of the suspension to linger on your palate. If you wear any kind of removable appliance (partial, retainer, mouth guard) you need to treat the appliance as well. (PS..yeast feeds on sucrose, simply sugars, so sugar substitutes containing xylitol can be helpful, and help increase salivary flow).

Cheers!
PS, I leave to climb Mt Whitney Friday of this week...wish me luck!

PSS...Phil, nystatin is an anti-fungal treatment that is used for oral yeast infections (as well as other localized or systemic fungal infections), that are common to those that have been on long term antibiotic therapy, are otherwise immunosuppressed, or have issues with dry mouth.

[Cindy]

Phil, I'd have to look it up but my doctor did ask me if I had been on antibotics lately. He said that can cause an in balance in bacteria - so, you may want to check-in with your doctor. My doctor also asked if I was taking any steriods. And I have had chronic dry mouth for years now.

[Cindy]

Thanks Palmyra! And your hit my "personality" nail right on the head :) Thanks for the information :)

AND - have a fanstasic time on Whitney! It's beautiful but a challenging climb. Take lots of pictures.

[drz]

Thanks for this info. I just got put on the oral Nystatin for oral yeast infection. (white coating on tongue and mild sore throat) which I thought was due to night time post nasal drip.


Ohhh Cindy,
Now you are talking my language, and one that I have an advanced degree in! All things oral medicine, so keep me posted privately if you wish. Nystatin oral suspension is good, and is used as a first line treatment for oral fungal infections. I know your character from this forum (very diligent!), so to be ultra compliant, when you 'swish and swallow,' turn your head upside down a bit, to allow some of the suspension to linger on your palate. If you wear any kind of removable appliance (partial, retainer, mouth guard) you need to treat the appliance as well. (PS..yeast feeds on sucrose, simply sugars, so sugar substitutes containing xylitol can be helpful, and help increase salivary flow).

Cheers!
PS, I leave to climb Mt Whitney Friday of this week...wish me luck!

PSS...Phil, nystatin is an anti-fungal treatment that is used for oral yeast infections (as well as other localized or systemic fungal infections), that are common to those that have been on long term antibiotic therapy, are otherwise immunosuppressed, or have issues with dry mouth.

[Cindy]

Just returned from Lance Mackey's "Come Back Kennel" in Alaska.

Spent 4 days working with 105 dogs!

Lots of hard work, but so much love in return.

I stopped counting doggie kisses at around 2,000 :flapper:

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[pberggren1]

WOW! You just totally amaze me Cindy.

[vdub]

You sure have determination! Way to go! I saw Lance on one of the talk shows (Leno maybe?). He seems like a real nice guy.

[Cindy]

Thanks guys - yes "determination" that's the word.
The Mackey's are great people.
They treated me like I was one of the family.
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This is one of their 10 house dogs.

[Sangye]

Sounds like great fun. :smile1:

[Cindy]

I just returned from San Francisco where I gave my Reaching Beyond the Clouds presentation at a rare disease conference. The disease is called "cystinosis" and it not is the vasculitis family. I find comfort being around other people who have an idea of what it is like to be "rare." Most people I intereact with try to understand, but . . .

The first picture is me with Christy Greeley (CRN President) and the next one is with Mary Cobb from NORD.
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[Cindy]

Hubby and I just returned from a few days of vacation.

Have VF banner - will travel :biggrin1:

This is the summit of Mt. Shasta (14,179 ft).

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[Psyborg]

That is awesome.

I have a weird question for you Cindy. Have you ever considered some sort of group activity? Like if you had a group of healthy Vasculitis patients that did something together. I find your climbs inspirational :)

[Cindy]

Hi Bob,
Thanks. And the group activity is a geat idea however my book should be out for sale in the next couple of days - maybe tomorrow - and I will be busy with it.
I will, however, start my brain spinning on possiblities for later:thumbup:

[Cindy]

My book "Reaching Beyond the Clouds: From Undiagnosed to Climbing Mt. Everest" just went on sale! :w00t:

A portion of the sales proceeds will go to the Vasculitis Foundation.

Here's the link: Purchase My Book - Reaching Beyond the Clouds (http://reachingbeyondtheclouds.com/my-book/purchase-my-book/)

I am interested in your feedback.

[Palmyra]

Ahh, Cindy!

I love your summit shot at the top of Shasta! After being in the area so recently, it means a lot to me. I know where you took that picture! It is beautiful, to be sure. And, I hope it will inspire many others to the condition of rare chronic disease, and the promise of a cure. Keep on climbing!

Best Wishes,
Palmyra Jane, recently up the summit of Mt Whitney, via the mountaineer's route, East buttress. Mom of Alison, Crohn's'99, Weg'06

PS..Good luck with the book, and please let us know where it might be available. Cheers!

[Cindy]

Thanks Palmyra! And you know me - I'll keep taking that banner everywhere :biggrin1:

The book is available now. Just click the link in the above post and it will take you to the publishing company and a secure purchasing site.

[Cindy]

The book just became available on Amazon.com. The eBook will be ready in a few days. Check out the "Book Trailer."

Amazon.com: Reaching Beyond The Clouds: From Undiagnosed To Climbing Mt. Everest (9780615482910): Cindy L. Abbott: Books (http://www.amazon.com/Reaching-Beyond-Clouds-Undiagnosed-Climbing/dp/0615482910/ref=sr_1_1?s=books&ie=UTF8&qid=1312846939&sr=1-1)

[Cindy]

According to Amazon, the eBook version should be ready by this weekend.

If you are thinking about purchasing the book, I am donating 100% of the August sales proceeds to the Vasculitis Foundation.

[Geoff]

Fantastic Cindy!

Congratulations on seeing the project through. I can't wait to get my hands on a copy!!

[Sangye]

That's great news. Thanks for making it available on Kindle. I just got one recently and don't want to go back to regular books anymore.

[Sangye]

Just saw that it's already available on Kindle. Hot diggety!

[drz]

Just saw that it's already available on Kindle. Hot diggety!

Great, now I can get it without having to wait for mail to deliver.

[jola57]

Congtatulations, it will serve as a reminder to us that anything is possible if we set our minds to it and our bodies are able

[NicShaf]

Cindy,
Just got your book in from Amazon. I'm so excited to start it tonight!

[Trudy]

Cindy,
Took less than 2 minutes to go from your link to reading on my Kindle. Thank you for your hard work in writing this book!

Trudy

[DEE]

Have ordered the book from amazon as I dont have Kindle, it takes 5/30 days to get to uk .Watch for the post every morning !!!

[RudiK]

Hello Cindy, your book is an inspiration for all of us WG patients. It's on my Kindle. I wish I had your energy and determination. Thanks, Rudi K.

[DEE]

Ok my book came through the postbox today about 10 am.Took a cup of tea and book back to bed. Its now nearly 2pm and have just put in down around 200ish page.Tummy saying fed me !!
It is a teriffic read ,so easy to follow with the need just to read a few more pages !!!!!!!!!!!!!!.
Hubby just asked if I want to go out ....i dont think so,
Ok tummy fed back we go .Well done Cindy :thumbsup:

[Sangye]

Dee, check out the Kindle. It's awesome. You can adjust the size of the text which is great for changing vision. I didn't think I'd love mine as much or as quickly as I have. LOL

[Trudy]

Dee, check out the Kindle.

There is nothing like curling up with a book in hand, BUT I also love my kindle! I was dead set against one, and my hubby bought it anyway. It fits in your purse no matter where you go (doctor's waitng room). Also if you have a computer there is a new application to download where you can read it on your computer where you can make it REALLY big. Now as gifts everyone gives me Amazon cards to buy more books, which I can not complain about. Now I sound like a salesperson!
:rolleyes1:

[Sangye]

I thought I would miss the curling up with a book feeling. Nope! It disappeared immediately. LOL I've read more in the past month than I have in the past year. Seriously.

I occasionally look at the Kindle on my PC but the backlighting from the monitor makes it hard to look at for long. Whoever thought of that aspect on the Kindle was brilliant. I sound like a salesperson too! :laugh:

[drz]

Another sales plug for Kindle. It is nice to be able to store lots of book without worrying about space or wondering about how many books to take along on a trip. You run out of endurance long before you run out battery life when reading. Now they are half price from when I bought too. I got the bigger size one but the regular size ones might work OK too.

[mishb]

Wish I had a kindle.:sad:
It's taking forever for the book to come by snail post to Australia.

I borrow books from the library because I go through so many a week, having nearly 3 hours of train travel a day (to and from work) to get reading in.

..... just be patient Michelle.

[DEE]

Dee, check out the Kindle. It's awesome. You can adjust the size of the text which is great for changing vision. I didn't think I'd love mine as much or as quickly as I have. LOL
Just checked on Kindles ,they are about 25 english pounds more expensive in uk than usa , time to put a call into my brother I think. Hes home in Florida at the moment .

[Sangye]

Cool. Definitely get the less expensive one that comes with ads. They only show up on the screensaver, so it doesn't interfere with reading or anything. I figure they can advertise to me all they want while my Kindle is zipped up in its case. :laugh:

[vdub]

BUT I also love my kindle! I was dead set against one, and my hubby bought it anyway.
I just bought a kindle for my wife. I knew she would never buy it on her own. I see her using it more and more. So far, tho, she hasn't spent a dime on books. She's reading some of the thousands of classics that are free. Eventually, she might buy a book, but it's going to be a while....


Definitely get the less expensive one that comes with ads. They only show up on the screensaver
I did not realize that you only got the ads during the screensaver. I did a lot of research on the various e-readers before deciding on the kindle and that aspect of the ads was never mentioned. The kindle seems to have the best screen. I might even get one for myself....

[Sangye]

I've been reading the free classics, too. It's hard for me to stand for long so going to the library canvassing the shelves is out. It wouldn't even occur to me to read some of the books I've read.

I did a lot of research, too and rarely saw anyone mention the unobtrusive ads. But it seemed everyone was getting that one so I figured if they could handle it, so could I.

But I see we're hijacking Cindy's thread so I'm gonna throw down a Putin on myself. Let's start a new thread about e-readers!
:back on topic:

[drz]

Back to Cindy:

How are book sales going so far? Any data yet? Any publicity talk shows on TV or other big speaking dates in near future?

[Cindy]

Hi Everyone!

Sorry I have not responded! I wasn't getting my "notiifications" but I think I fixed that issue. Also, I just returned from Alaska - dog sled training with Lance Mackey :)

Lots going on - which is good. Literally minutes before I left for Alaska, I was interviewed on the Dennis Miller Show. Here's the link Dennis Miller Radio: Interview Clips - From the Dennis Miller Show to Alaska (http://www.dennismillerradio.com/b/From-the-Dennis-Miller-Show-to-Alaska/-821990337906910660.html)

I have some book signing coming up and hopefully more media interviews as they read the book. I will be mailing a check to the VF later today for my share of the August sales.

I'll be back later, with more information - trying to catch-up, promote book, and working on Iditarod stuff.

Glad you like the Kindle version, I don't have one YET. And if you have the time, please go on Amazon.com and "Create your own book review." It will help promote sales :)

Amazon.com: Reaching Beyond The Clouds: From Undiagnosed To Climbing Mt. Everest (9780615482910): Cindy L. Abbott: Books (http://www.amazon.com/Reaching-Beyond-Clouds-Undiagnosed-Climbing/dp/0615482910/ref=sr_1_1?s=books&ie=UTF8&qid=1315508849&sr=1-1)

I am interested in what everyone thinks of the book. It was tricky to write it so that I was respectful and informative to a wide range of readers.

Take Care,
Cindy

[drz]

Great interview clip. Thanks for sharing!

[Palmyra]

Cindy,
We all wish you the best. Thank you for all you do to raise awareness of Vasculitis and rare disease. More power to you strong lady!!

[DEE]

I have not got a kindle ,but recieved my book last week .If I tell you I read it in a day ,just could not put it down .:thumbsup:

[Cindy]

Ive not got a kindle ,but recieved my book last week .If I tell you I read it in a day ,just could not put it down .:thumbsup:

Did you really!?!

[DEE]

Yes ,except when tummy was growling for food ! Read from cover to cover .Taking it to a friends this weekend she wants to read it .

[Cindy]

WOW, Dee! :blushing:

Sangye, I love that picture :flapper:

[Cindy]

Update:

My training with Lance is going very well. I am learning a lot and things are looking good for me making the four qualifying races I need this winter in order to race in the 2013 Iditarod Race :) Then I can get some more major media - because when I cross the Iditarod finish line - I will set a World sport record! This will generate major media coverage, not to mention raising rare disease awareness on a massive scale :)

Financially things were not looking good, but my hubby saved the day by taking out a loan on his retirement account. However, I still need a more to cover this year's expenses. Again hubby helped by coming up with a great idea!

Ask people/companies to sponsor a dog for a single race. At the end of the race they get photos and the dog's racing coat. Each coat will have the person/company's name on it along with the race name. Dagger, whose daughter has WG, is a graphic designer and he is donating the graphic designs! He also created this sponsorship flyer.
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Here is the racing schedule:
Sheep Mountain 150-mile Race December 17th, dog sponsorship $300
Gin Gin 200-mile Race December 28th, dog sponsorship $400
Copper Basin 300-mile Race January 14th, dog sponsorship $500
Willow Tug 300-mile Race February 3rd, dog sponsorship $500

Also, all racing proceeds will be donated to the Vasculitis Foundation.

So, any help you can give me to get the dogs sponsored would be very much appreciated. You can direct people to my website. There is more information.

Have to run, but have a great day!

[mishb]

Have finally received a copy of your book Cindy.
I was going to save it to read on the train from Monday morning but couldn't help myself and am already nearly finished.
What a wonderfully inspiring book.



It's hard for me to stand for long so going to the library canvassing the shelves is out. It wouldn't even occur to me to read some of the books I've read.

Our library's have am internet login service where you choose the books on line and they actually collect them for you from the shelves and then send you a message to say they are ready to be picked up. My daughter then goes and gets them for me and drops them back when I have finished.
It is a perfect system :wink1:

[Palmyra]

Cindy,
I will be looking for friends with deep pockets to sponsor some of those dogs. No promises, as I am not in that deep pocket category, but it can't hurt to ask! Best Wishes!

[Cindy]

mishb, Thanks for your kind words! That book took a lot to write. I still cry when I read some parts.

Palmyra, Thanks that would be great! Maybe someone would sponsor your daugther and she can "run" with me :)

So far, this is what I have:
Sheep Mountain 150-mile Race December 17th, dog sponsorship $300 - 6 spots left
Gin Gin 200-mile Race December 28th, dog sponsorship $400 - 7 spots left
Copper Basin 300-mile Race January 14th, dog sponsorship $500 - 7 spots left
Willow Tug 300-mile Race February 3rd, dog sponsorship $500 - 7 spots left

All these are people who have rare disease or a disease. It would be amazing if I would frun a rare disease/disease team! I could get more media attention!

What about a "Team Weggie"? Each dog in my first race is $300. If 10 people gave $30 each - that's a dog - and Dagger can design the coat (he does great work!). Then there could be a drawing on who gets the coat :)

[Cindy]

Here are some more details regarding my next Awareness Event. All money donated will go toward race expenses. I have already taken out loans for $20,000 but more is needed. Why am I doing this? Because I have to. If you've read my book you understand.


Also, when I cross the finish line at the Iditarod, I will set a world record! I do not care about personal recognition, I want to scream out "WE ARE OUT THERE" and this will do just that!


For information regarding sponsorship, you can refer people to the Sponsorship Tab on my website.
If someone you know decides to sponsor a dog, there is a secure link to donate through Pay Pal.
I will running all racing with one lead dog wearing a NORD coat and the other wearing a VF coat.
http://reachingbeyondtheclouds.com/why-donate/sponsor-or-donate-for-qualifying-race-support/


Thank you in advance for any help you can provide.

[Sangye]

Those are great ideas, Cindy. :smile1:

(BTW The Putin was Andrew's. I sure miss his sense of humor around here.)

[pberggren1]

Andy does have a weird sense of humor for sure........lol

[Cindy]

Hey Everyone,

I have been so busy with things I haven't checked in for a while. Working on some major film coverage - image a film about someone with WG. That should help raise awareness and money for the VF.

I just received my racing logos designed by Daggar - he does amazing work.

Can I ask for your opinions on each of the logos?


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[Trudy]

Wow Cindy , Daggar really does nice graphics! Personally I like the intensity of "Racing for Life"; it has a seriousness to it. However, paws are used alot and appeal to people. How will you be using the logo?
Trudy

[mishb]

I love the Paws for a Cure. I think it tells people straight away that you are bringing awareness to something.

Terrific job Daggar and I love the colours

[Cindy]

The banners will be used during my racing, like I did on Everest and I will have it put on my dogs' racing coats.

After talking with a VF board member, we are thinking of using "Racing for Life" as my main racing banner.

We also are thinking that the VF can do fund-raising by selling t-shirts and sweatshirts with those logos. "Racing for Life" on adult items and "Paws for a Cure" on children's clothing.

[Cindy]

I returned from 10 days of dog mushing training in Alaska a few days ago.
Here is a picture of my racing banner/logo. It was taken at 3 AM after a 12-hour run.
I leave next week for more training with my first race on Dec17th.
A film crew is catching the story as it develops and we hope a network will pick it up.

Click on the picture to make it larger.
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[Dryhill]

Hopefully a network will pick up your story, the more exposure we get the better. Between you and Marta it looks as though people will start to learn about our delightfully fun disease. Thanks for all your doing to raise public awareness.

[Cindy]

Just got back from running my first race. I leave again Saturday to run the next one.

Here is a picture of Rev modeling my racing coat.

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[drz]

Just got back from running my first race. I leave again Saturday to run the next one.

Here is a picture of Rev modeling my racing coat.

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How did it go? Any news coverage for these races?

[Rini]

I am so happy you get to race! this is very cool to me.

[pberggren1]

I would love to come to Alaska and watch the races.

[jola57]

Here's to the finish line :hug3:

[Al]

Here's to the finish line :hug3:

(Hey, Jolanta--at my age and in my condition, I might be sensitive to such terms! Finish line, indeed....)

Al

[Al]

Very nice!

Al

[vdub]

Tell us more! Was it a sprint or distance race? How many dogs and how did your lead perfrom? I'm having Christmas dinner with Kirk Barnum on Sunday. Kirk finished this year, but I'm not sure of his exact placement.

[Al]

Tell us more! Was it a sprint or distance race? How many dogs and how did your lead perfrom? I'm having Christmas dinner with Kirk Barnum on Sunday. Kirk finished this year, but I'm not sure of his exact placement.

Cool! Maybe grab some snapshots...?

Al

[Cindy]

Back home from second race. It was -32 when I left fairbanks on Sunday. I scratched due to difficult trail conditions (deep snow and overflow) on the second leg (85 miles) as did 9 out of 20 other mushers. Mushing is a very difficult sport and I am learning so much. My team is young and strong with one veteran leader - we are still trying to workout who is the Alpha Dog! My team is amazing: so loving and powerful!

I leave tomorrow for my next race - the Copper Basin 300 Mile Race. Very difficult course.

This picture was taken after I ran 120 miles on the Gin Gin 200 Mile Race. I did take a shower before the picture.

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[Natalie]

Hi Cindy , Wow you have done so much since I was on the forum last ! Hats off to you Mate wow .. love the Banners ! ... My Specialist has just come back from 6 months in Alaska and in his office he has a massive screen with all his photos of his trip ,, He did a lot of Sleigh running I suppose you would call it :) you may of run into him lol ! I will go and see what I can do with sponsoring Dog , What a great idea and cause ! :) good luck with everything :) NAt x

[pberggren1]

WINTER? What's that?.......lol.

I would love to be up there right now with you Cindy. You go girl.

[vdub]

Fairbanks, eh? Lived there for 3 years. Very nice place. -32F is pretty much par for the course on most given days during the winter. -50F is a little more unusual, but we saw it several times.

[Cindy]

Hey vdub,

Yea. My first 115 mile camp-out was in -50 degrees!

Hope you are well.

I am off to the airport :)

Cindy

[vdub]

I had Christmas dinner with Kirk. He's taking his team up to Anchorage the end of Feb, so he can get a month of training in before the race starts.

I was talking to him about the race and I always thought the part before Rainey Pass would be the toughest, but he said the piece between Unalakleet and White Mt was the worst -- wind swept, barren, no reference points, and very lonely.

[Cindy]

Just returned from Alaska where I was running in the Copper Basin 300 Mile Race. I was doing well and my dog team was getting stronger with each leg of the race. As I pulled into the second check-point (about 80 miles into the race) I was told the race was on hold due to extreme weather conditions up the trail so I parked my team and waited. Several hours later the race was cancelled. I was very disappointed but you cannot flight Mother Nature - she always wins.

This picture was taken about an hour before the start.

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[pwc51]

I was following the race on the Copper Basin website and was most disappointed for you when I saw it was cancelled. Better luck with the next one.