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Cindy
11-14-2009, 10:25 AM
I just returned home from several days of training on Mt. Hood, Or. :p
Each day that goes by is bringing me closer to reaching my goal of climbing Mt. Everest! I wish someone else with WG could join me on the climb - it could be quite an event.

Sangye
11-14-2009, 11:33 AM
LOL...Not me! I could barely climb on to the exam table at the doc's today.

I'd probably get down the mountain at record speed, though. Nice round pred bodies roll fast. :rolleyes:

andrew
11-14-2009, 11:47 AM
I'd love to, really but I can't afford it......

and I'd need about ten years of training....

and a leave pass from the Mrs... :D

It would truly be a great adventure. To be able to get to the top of the world would be the most incredible experience.

Cindy
11-14-2009, 03:18 PM
Sangye, I turned down the steroids meds and it (so far) has worked for me - I am sooooooooooo lucky!
Andrew, I cannot afford it - pulling my retirement to do it but why not . . . . I mean life is an adventure and I am going to follow its path . . where ever it leads me. Also my hubby has been a jewel :) He has been so amazingly supportive even though he is very worried: but he is allowing me to follow my dream - what more could one ask for in a support system :) I have the best life!

Cindy
11-14-2009, 03:22 PM
Oh, and anyone who could join me can make the trip to Everest base camp: much cheaper and about two weeks ($4000 + $500 + airfare) - I used Frequent flyer miles for my ticket. That would be so amazing if we could get a Team WG to Everest Base Camp! It might rock the world to show healthy people what WE CAN DO!
P.S. I do not mean to down play people who are very very ill with WG. The six weeks before my Mt. Aconcagua climb, I was very ill, but I just pushed through it (although I did break my leg on the way down - minor details). Really, I want to draw attention to our situation! Please bare with me and my goal - it is truly amazing that at this point in my life (everything concerned) I have a real chance of standing on top of the World holding a Rare Disease Awareness banner!

Sangye
11-14-2009, 05:13 PM
Cindy, you've been really lucky that refusing pred has worked for you--for a good number of Weggies with active disease that would be a death sentence. Refusing the steroids would have killed me twice by now. When it comes to hemorrhaging lungs, there are no alternatives to using steroids.

Fortunately I was able to be off them for about 2.5 yrs, and should be able to be off them again once the rituxan kicks in. But they've done serious damage to me that may never be corrected. Many Weggies can never get off them without triggering a flare. It's awful.

andrew
11-14-2009, 07:12 PM
Hmmm....did a quick check to see what high-altitude trainign I could do in Australia. Our highest peak is at a smidge over 2200m. A bit too 'short'. You have sparked my imagination though. It would be something I'd love to do, even if it is just to one of the first couple of base camps.

elephant
11-15-2009, 12:29 AM
:)Andrew, go for it! Any challenge that you accomplish will bring you joy! :):cool::D

Sangye
11-15-2009, 02:40 AM
Andrew, you should definitely give it a try if you can!

Cindy
11-15-2009, 04:10 AM
Sangye,
Yes I did take a gamble by refusing steroids: I did a lot of research weighting out the benefits vs risks. My doctor was a bit surprised but I feel that I have to be in control of this thing and I do not have any lung involvement. I had a flare before going on the medication and one right after starting it, but none since. I still have positive ANCA but (from all signs) I seem to be stable.

Cindy
11-15-2009, 04:45 AM
Andrew,
It is possible for you to go to base camp without too much physical effort. I do not know your current situation but training in a gym works great for the "trek" aspect of Everest. I will send you an e-mail with more details.
I talked to my guide and he welcomes you to join us (he knows the details of my situation with WG).

andrew
11-15-2009, 01:39 PM
Thanks for the email, Cindy! Doing some thinking :)

Cindy
11-22-2009, 04:29 AM
The more I have thought about, the more I think I will try to get a trekking team together. I will post it on my climbing blog. There is already a fund-raising team of 20 people signed up. I can have it added to my event of the Vasculitis Foundation's web site and I think NORD will be adding it to their site also.

So, if you know of anyone who may be interested here is the basic info:

1. Arrive in Kathmandu on April 5-6.
2. Total time in country is 19 days.
3. Cost: $3900 for trek, about $500 spending money, and airfare (I used Frequent Flyer miles).

It involves about four hours a day of trekking with day packs. The porters take the rest of your gear to the next stop.

PM me if anyone is interested in more information.

Doug
11-22-2009, 11:09 AM
Sorry! Not this time, but I sure would like one of those pandas! Seriously, tell us a bit about how you happened to be (I guess!) in China, holding a juvenile panda.:)

Cindy
11-22-2009, 04:17 PM
Doug, I watch the Animal Planet and Discovery shows. If I see something that looks amazing: I go there and do it. I save up (some times for years). Example, look at the picture of the cat in my photo gallery. That is Kane (who was four years old when I was lucky enough to pet him - more than a bit scary)! I saw him on a TV show when he was 4 weeks old and I said to my husband "I have to go there and four years later we did - and I got to pet him. It was the same for the Panda Research Center in China and the pink dolphin in the Amazon River. I mean what is life for if not for living! This is exactly what happened with my quest to climb Mt. Everest - I saw a TV show and said I have to go do this! And now I leave in April! Wegeners or not: I must live life.

elephant
11-22-2009, 10:48 PM
My son and I watch the Discovery channel and animal planet too. The only thing is that I can't watch a show if any animal gets hurt. What a beautiful world! So much too see! I am too much of a chicken to travel. I would be the one to break something, get a weird virus/bacterial infection. So I feel safe in the USA. Cindy, your positive and no fear attitude is great!:o

Cindy
11-23-2009, 10:33 AM
elephant,
You wrote "I would be the one to break something, get a weird virus/bacterial infection." You know I broke my leg near the top of Argentina's highest mountain and I oh my gosh - did I get some food-thing in Kyrgyzstan :eek: I carry lots of (just in case) meds with me when I travel. I will be traveling in Nepal with meds and N95 face masks!

elephant
11-23-2009, 11:45 AM
Here you are doing what you love to do and you don't let anything stop you! That is what is great!:)

Doug
11-23-2009, 12:45 PM
Incredible, Cindy! The rest of us are slackers in comparison!:)

Cindy
11-24-2009, 05:17 AM
No Doug - you are not slackers! Since I was a child I knew I was different. By age 16 I was applying to the Air Force Academy to become an astronaut. Then I fell in love (which disqualified me) so I went into the police academy instead. As you can see, I am a little off of the normal path - but who wants to be normal :p

Doug
11-24-2009, 05:32 AM
No Doug - you are not slackers! Since I was a child I knew I was different. By age 16 I was applying to the Air Force Academy to become an astronaut. Then I fell in love (which disqualified me) so I went into the police academy instead. As you can see, I am a little off of the normal path - but who wants to be normal :p

Well, that just makes you one of us cracked nuts!

Seriously, stories like yours can be a big boost for others, even if they don't climb Mt. Everest or fly to China to hold a panda. Some of us had such guarded prognoses (I guess that's plural!) that, at the time, the biggest mountain to climb was not to die. Reading your story is to realize there is hope, that while our weggie stories all are different, dreaming needed die with a diagnosis of WG! Thank you, Cindy. I give a virtual hug.:)

Cindy
12-08-2009, 03:06 AM
Hubby and I spent yesterday climbing Mt. Badly but the storm coming in this week is expected to drop 3 feet of snow on the mountain - so, I will have to start training alone (Hubby does not like snow climbing).

I am getting very excited about Everest: I leave in 3.5 months!

Going to see my UCLA doctors next week - must make sure all is well.

Sangye
12-08-2009, 03:09 AM
I hope you get an excellent report from your docs next week. I bet those 3.5 months will fly by!

elephant
12-08-2009, 03:34 AM
Good luck at the doctors office, you will do well. Something exciting to look forward to, blink your eyes and it will be here soon.

jola57
12-14-2009, 11:19 AM
I can't immagine you not having a glowing report from the doc. 3 1/2 months, it will fly just like that, we are all getting excited with you.

Terri
12-14-2009, 12:14 PM
Oh Cindy, I think you will do it!
I'm having trouble climbing a flight of stairs right now:(
However, I will be with you 100% and I am looking forward to seeing that banner on the front page of The Vasculitis Foundation(May issue) possibly.
You are what gives us hope. Thank you.

Sangye
12-14-2009, 02:38 PM
I actually had to climb a set of stairs today. I haven't been able to do it in 4 years, but there was no way around it-- bit of an emergency. I was amazed I could do it!! I've been getting stronger tiny bits at a time and I guess it's adding up.

elephant
12-14-2009, 11:04 PM
Good for you Sangye, one step at a time. Soon you will be able to meet Cindy half way somewhere in the US and go have a good soft taco. Will leave the cat out of that one.:)

Sangye
12-15-2009, 01:46 AM
That got me laughing!

Cindy : Let's meet at the Mississippi River for lunch.
Sangye : 'Kay!

Yeah, no more cat tacos. The aftertaste is awful.... :D

Cindy
12-15-2009, 02:38 AM
Sangye,

I know a great place to eat near the river!

What is this about cat tacos :eek:

Sangye
12-15-2009, 06:24 AM
It's a reference to a funny picture I posted in the Off Topic--Pet Talk thread. We were talking about tacos and I found the perfect picture.

jola57
12-22-2009, 01:39 AM
Sangye, I was blesssed to bounce back quickly and although I do it very carefully, especially going down, I can climb stairs now (huffin' and puffin'). It was each day at a time, a slow progress but look at me now! I can't climb mountains, trek, or my favourite - ski anymore, but I can climb the stairs. LOL A good trade off eh?