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Cindy
11-06-2009, 11:41 PM
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.

After watching an amazing Discovery Channel show called Everest: Beyond the Limit, I was drawn to climb that mountain: the beauty, the challenge. Please realize that at the time I had climbed only Mt. Kilimanjaro and was no mountaineer. So, at the age of 48, I was going to start training for a new adventure: mountain climbing. Subsequently, I contacted Scott Woolums, a very experience high-altitude guide, and we made arrangements to climb Mt. Aconcagua in Argentina (the highest mountain in South America) for our first training climb.

Then it happened! While shopping at a local nursery I was overcome with vertigo and realized I could not see out of my left eye: a retinal vascular occlusion. After reviewing test results, Dr. Holland and Dr. Kreiger (Jules Stein Eye Institute, UCLA) referred me Dr. Gorn a rheumatologist at UCLA Medical Center. On August 1st 2007 I was diagnosed with Limited Wegener's Granulomatosis. As shocking as that was: At least now I knew what I had and began a medication treatment program.

Two weeks later I was admitted to the emergency room having TransientIschemic Attacks (TIA - mini-stokes). OK, more medical tests and doctors check-ups: but I keep moving toward to goal of climbing Mt. Everest. As many of you know, the medication(s) to treat WG have side-effects and can make you very ill: which, for me, lasted for many months. I continued training – I have a mountain to climb!

Four months later, we went to Argentina and climbed Mt. Aconcagua. Unfortunately at 20,000 feet we had to abort our summit attempt due to very high winds. On the way down, around 19,000 feet, I snagged my boot on the other boot, fell, and broke my leg: but I still had to hike 5 hours down to base camp because we were too high for helicopter evacuation. Over the next 7 months I had a couple of surgeries (plate in/plate out) and continued on – I have a mountain to climb.

This past Summer, with the love and support of my wonderful husband of 18 years, we summited Mt. Rainier, 14, 410 ft; summated Mt. Elbrus, Russia, 18, 513 ft; climbed Peak Lenin, Kyrgyzstan, to 22, 500 ft, we had to abort summit due to team member getting frost bite.

Currently, I am in remission due to a continuous medication treatment. Fortunately and unfortunately, the medication suppresses my immune system thus putting me at a risk high infection. If I stop taking the medication, however, the disease can continue to damage my body. Most obviously, the disease is attacking my eyes and I am functionally blind in one eye, but (for now) we have saved my other eye.

I am a 50 year old female who teaches Health Science at California State University, Fullerton.

I leave for Kathmandu on April 1, 2010 for the 70 days it takes to prepare for and climb the South Side of Mt. Everest. The fact that I have Wegener's Granulomatosis does not change my drive to live life to its fullest and that is exactly what I plan to do!

For more on my story go to my climbing/fund-raising blog at
www.reachingbeyondtheclouds.com (http://www.reachingbeyondtheclouds.com)

I will be climbing to raise Rare Disease Awareness and money for the Vasculitis Foundation for research and support services.

Doug
11-07-2009, 05:02 AM
:)Wow! What else is there to say? (Being me, however, I'll continue on, and on anyway!) Very inspirational. We emphasize a positive attitude on this site, and you exemplify it. I'll try to get on your blog again after I finish on this site. My computer is running slow today, so I probably will have to work on that first. Anyway, thanks for posting your story! I'm going back to the top again, it's so good! I hope you can post us from Nepal when you do the big climb, or at least tell us about it later.

Cindy
11-08-2009, 03:28 AM
Hi Doug, Nice to meet you. I will be able to post from Everest base camp but only to my climbing blog. My hope is that I will get media attention during the climb so people will donate to the Vasculitis Foundation to raising money for research!

Sangye
11-08-2009, 03:45 AM
Cindy, so you didn't have lung or kidney involvement?

Cindy
11-08-2009, 07:21 AM
Sangye,
Well, I have blood in my urine (mild to moderate) but (so far) no lung involement. I have several issues with the WG stuff and taking the meds at extreme altitude is tricky but so far I have been able to stay on my training schedule: some days are better than others - as we all know.

coffeelover
11-09-2009, 05:13 AM
Wow! Cindy,

I am impressed and inspired. I believe in your "live life to the fullest" statement, but I have not had the courage to venture to the levels you have. I am very impressed. Please keep us informed....for inspiration if nothing else.

Lisa Coffeelover

Doug
11-09-2009, 07:42 AM
My cat can beat your panda....! No, once again I commend you for your remarkable spirit and daring do.:p

Cindy
11-09-2009, 10:07 AM
Lisa: Thanks :) I have always followed my dreams to experience and explore everything! Check out some pictures I posted in my photo album. I do not think of it as courage - more like tenacity. After being disgnosed with WG I decided that I was going to be in control of my life: not the disease!

Doug: Ha-Ha, that panda could have ripped my face off! I was at a panda research center in China. I have cats - they also type on my keyboard (so helpful).

Just got home from hiking Mt. Baldy - time for a nap :)

Cindy
11-09-2009, 10:28 AM
Can I ask you all a favor? If you visit my blog would you leave a comment about your story or the need for research etc... I am in the process of trying to get California to recognize Rare Disease Day (Feb 28th) and your comments would help the Governor see that WE ARE OUT THERE and need special legistation for our awareness so we can get diagnosed, special treatments, medications, and services.

www.reachingbeyondtheclouds.com (http://www.reachingbeyondtheclouds.com)

Thanks!

elephant
11-09-2009, 10:36 AM
Cindy like you I have left eye pain for years, went to about 8 different eye docs and said it was dry eyes. Finally I was diagnosed last year and they are doing a cat scan of my orbitals tomorrow. Your a great inspiration! The disease and medications can be a bit challenge and its so good to hear your great positive attitude.:D

Cindy
11-09-2009, 11:52 AM
Elephant, I hope that you have eye doctors that know about WG! If you are near or can get to Jules Stein Eye Institute at UCLA you should try! The doctors are listed on my blog. Seriously, I was so close to being blind and they stopped it (for now anyway), but I can never go off my meds because I will loose what vision I have left. Good luck and be aggressive with your treatment. After all, it is your life - you deside what is best for YOU!

elephant
11-09-2009, 12:38 PM
:)I went to see Dr Carol Langford at cleveland clinic and she ordered the CT scan. So once I get that done tomorrow my Rheumy will send the pics to her so she can look at them. I had so many CT scans of my head/sinus in the last 2 years and I actually brought one of them for her to see , but it wasn't a good pic of my orbitals. I usually stay on top of things. I will be taking immunosupressant drugs for the rest of my life because of my kidney transplant (1989). Perfect match my brother gave me his kidney. Thanks for the advice. If it get's worse I will look into UCLA. I live in South Carolina.:)

Cindy
11-11-2009, 03:19 AM
I went to the doctor yesterday and found out I have to have an dyophangial study (having problems shallowing my pills). Trying to schedule that now before I leave for Mt. Hood to do some specialized rappel training for several days. It is difficult to manage life, family, work, training, and the medical stuff: a bit little putting a puzzle together!

elephant
11-11-2009, 03:49 AM
Cindy,I sometimes have trouble swallowing ( dysphagia) but it is controlled when I take my Nexium. Sometimes I rebel and decide I'm not taking my Nexium this week. Only person I'm hurting is myself. The medicines we take can cause esophagitis( inflammation of the esophagus). Good luck on your test!:)

Cindy
11-14-2009, 10:18 AM
Elephant,
Thanks for the info :)
I completely understand about the "Pill Rebel"
Sometimes the pills are just overwhelming! And when I am training on these big mountains it is very difficult to stay on schedule. I mean I just cannot stop climbing, pull off my gloves, look at my watch, try to find the pills, taken them - all before my hands get frost bite: but I always love a challenge :) So, I climb on toward Mt. Everest.

Cindy
11-15-2009, 04:25 AM
It just occurred to me that maybe this was all meant to happen to me. The timing of it all goes: I decide to climb Mt. Everest, I have a flare (loose vision in one eye) which leads to me getting diagnosed with WG, I go through the process of tests and treatment, and I am now stable and strong enough to attempt climbing Mt. Everest. Now, I am in the process of getting California to recognize Rare Disease Day and raise funding for the Vasculitis Foundation during my climb (it is an Event posted of their website). Maybe I was allowed this chance to bring WG and other rare diseases to Federal attention so that some legislation can be change/made to help us with our special needs (i.e., research, medications, insurance issues, earlier diagnoses). Just thinking . . . .

Doug
11-15-2009, 08:01 AM
I can't think of a more dramatic way to do this! It shows that even a rare disease that one has for life needn't be the end of a life full of activities meaningful to a weggie. :)

jola57
11-15-2009, 08:44 PM
Cindy, thinking's good, getting governments and people to recognize obscure diseases by climbing Mt. Everest is supreme. My hubby did it in the 90's, it was not as comercialised as today

Doug
11-16-2009, 01:56 AM
Cindy, thinking's good, getting governments and people to recognize obscure diseases by climbing Mt. Everest is supreme. My hubby did it in the 90's, it was not as comercialised as today

(But did he get to hold a panda cub? There- I went off topic a bit so you don't worry I've lost that ability! P.S. My cat can beat his panda, too!):):D:rolleyes::eek:

Cindy
11-16-2009, 03:06 AM
jola57,

That is cool! Why do not you and your hubby join the WG Trek to Base Camp. Some info on another tread called training for Everest. The more that go - the bigger the message.

Cindy
11-20-2009, 05:11 AM
Just returned from having my dysphagia, barium shallow, esophagram testing done - and I passed :D No structural damage :D

elephant
11-20-2009, 05:47 AM
That's Great Cindy! Yahoo!!:D

coffeelover
11-20-2009, 05:53 AM
I say that you receive a A on that test! Congrats

Sangye
11-20-2009, 07:08 AM
Cindy, that's great news! What a relief!:):)

jola57
11-22-2009, 06:08 PM
Oh how wonderful one less thing to worry about:D

Doug
11-23-2009, 12:54 PM
Good news, Cindy! :):):):)

Cindy
11-26-2009, 02:47 AM
Within the last few days I am been in communication with two of my Everest summit team members AND one of them is a disabled athlete! I cannot say more with his/her permission but that is too cool!

Doug
12-01-2009, 02:02 AM
Within the last few days I am been in communication with two of my Everest summit team members AND one of them is a disabled athlete! I cannot say more with his/her permission but that is too cool!

I second that! I used to tell people who wanted to help me when I felt I should at least try to do something to determine if I could: "If you want an invalid, treat me like one." Sometimes I fell on my face, figuratively and literally, but I still learned something about my capabilities. :)

onatreetop
12-01-2009, 08:15 AM
I have to say that you have inspired me as well. Since I hit the weight I did and dicided it was time to take control of it again I have been exercising everyday in some form or another. Which leads me to this question, How are you or do you train for this event of a life time? There has to be a lot of strength and endurance training?

Cindy
12-01-2009, 09:58 AM
Onatreetop, GREAT! The best thing I think we can do is to tell ourselves that we are in control (although we all know if Weggie wants - it talks). Please be careful not to over do - especially at first. I have a Master's Degree in Exercise Physiology and know my body well. Also, I have been testing myself on a lesser level to evaluate the WG variables and training for Everest. After all, I do not have a death wish.

Training to climb any big mountain takes total dedication: both physical and mental. There is a lot of discomfort that goes with spending weeks (and for Mt. Everest months) at high altitude, in a tent, with one set of clothes, no bathing, finding and treating water, bad food, wind, snow, ice, cold, hot, going to the toilet in a zip lock bag - I can go on and on :eek:

If I am not working, I am training with both weights and aerobics. I climb a local mountain almost every weekend. My great Hubby goes with me. Training with ropes and knots, rock climbing, ice climbing etc...

However, I must be careful. I have some joint issues etc...
I am getting excited - I leave for Kathmandu in four months and one day :D

elephant
12-01-2009, 11:31 AM
Cindy, I think of you when I get on the treadmill. I keep thinking if Cindy can do it so can I, we both have WG! I am unable to exercise everyday, I just get warn out. I am on the treadmill one hour four days a week. I am trying to run and walk. I give you alot of credit sleeping in a tent, doing number 2 in a bag. Wow, that's a challenge in itself.:D:o

Cindy
12-01-2009, 12:22 PM
elephant, GREAT for you too! But please be careful not to do too much!

When I am too tried I listen to my body and do a lesser work-out or just have a rest day.

And yes, it is a learned skill - the baggie toilet - trust me on that issue ;)

Cindy
12-10-2009, 11:32 AM
The more I research other Wegener's patients' stories: the more I see the need to raise rare-disease awareness. Looking at story after story: I see definite similarities. Unfortunately, one of the similarities is that many people are not diagnosed while the disease damages their bodies to the extent that finally (after years or if they are lucky) someone puts the pieces together and treatment can begin. The doctors need to have access to informational resources enabling them to match the symptoms with the disease.

Doug
12-14-2009, 04:31 PM
Absolutely, Cindy. You are dead on in your statement.:):):):)

Cindy
12-16-2009, 09:08 AM
A media person at Cal State Fullerton (where I work) just released my story to the media! Also, she sent it personally to California's First Lady: I am trying to get California to recognize Rare Disease Day and Vasculitis Week.

Here is the link:

http://calstate.fullerton.edu/news/Inside/2009/cindy-abbott-prepares-for-everest.html (http://calstate.fullerton.edu/news/Inside/2009/cindy-abbott-prepares-for-everest.html)

elephant
12-16-2009, 09:18 AM
That's Great news Cindy! Thank you for doing this! So excited for you and what your doing for Vasculitis Foundation.:):D

Doug
12-17-2009, 10:48 AM
Good for you! The rest of us are slackers for sure.

Cindy
12-20-2009, 05:32 AM
OK, LA report released a media blast today that went to many sources. I hope to get TV, radio, or newspapers to pick-up the story. It will really help spread the work - especially to the Governor.

Los Angeles Woman Attemps to Climb Mt. Everest - KESQ.com Palm Springs, Coachella Valley - Weather, News, Sports: (http://www.kesq.com/Global/story.asp?S=11703917)

Sangye
12-20-2009, 05:52 AM
That's a great article, Cindy! I used to live in Irvine--got my Bachelor's and teaching degree at UCI. Back when it was just cow pastures and orange groves out that way! I didn't know you were headed to Antartica next. That sounds amazing!

Doug, I'm going to take issue with you calling the rest of us slackers. Would you have wanted someone to call you that when you were too sick to do much? I struggle to do basic things. And I really struggle not to judge myself or hold myself to what I used to be able to do, or what others with/without Wegs can do. I know you don't mean to hurt anyone with that comment, just please stop saying it, would ya?

Cindy
12-21-2009, 02:37 PM
Sangye, See: if you had not moved way from Irvine we could go walk your dogs together :) As far as Antarctica goes: it is my Christmas Wish for a sponsor to help me go there and train with my guide who is there now.

Also, I have reporters coming tomorrow for interviews - so may be may my wish will come true :rolleyes:

jola57
12-21-2009, 04:35 PM
Sangye, I am sure that you especially would do everything and anything if you could. Such is this disease of ours that we all have different disabilities that go with it. For example I am very glad that I can travel but I am sooo limited in what I can do. This recent trip with my hubby showed me just how much. We used to go and walk on our own the port cities while cruising but now I can baarely go 2 blocks without stopping, also the pace I can do now is at least 1/10th of my usual. Needles to say my hubby goes now by himself. Life can be unfair, some of us can climb mountains like Cindy while for some of us just getting out of bed and walking about the home is a success. We are all winners and as for slackers, well maybe there are some that simply will not do anything and moan and groan at everything.

jola57
12-21-2009, 04:40 PM
Good going Cindy, with the media coverage at least a bit of our struggle will be shown. Keep trekking.

Sangye
12-22-2009, 12:14 AM
Jolanta, you mean like this?


http://ihasahotdog.wordpress.com/files/2009/12/funny-dog-pictures-gravity-fight.jpg (http://www.wegeners-granulomatosis.com/forum/weggies-stories/%3Ca%20href=)

jola57
12-22-2009, 01:28 AM
Aha, exactly. That's just like me this weekend, because of this darned cold I just laze about in my jammies. My son, the med student, is here for the holidays so I 'm his gunea piggie. He keeps reading up on Weg's and says that in internal medicine and pharmacology a special section is devoted to autoimmune diseases and a lot on Weg's so hopefuly the new young doc's will have the necessary info to recognize it sooner in their patients.

Cindy
12-24-2009, 07:05 AM
OK, TV crew just left the house and my story will be on the ABC News at 5 PM pacific time tonight! If you cannot view it on TV I was told it should show up on the ABC INTERNET version for Southern California. :D

elephant
12-24-2009, 11:03 AM
That's great Cindy. I tried to find it on the internet, but couldn't. I am glad you got the word out about WG! Thanks!:)

Cindy
12-24-2009, 11:11 AM
Will not be on the INTERNET until after it shows on TV - at least that is what I am told. I am new to all of this stuff :eek:

elephant
12-24-2009, 11:25 AM
Cindy, I'm so goofy~it must be all the holiday treats I'm eating:o:D. I forgot I live eastern time SC. This disease has made my brain in to Swiss cheese. Love how I blame it on the disease.:p

elephant
12-24-2009, 02:27 PM
Hey Cindy, I saw it! You look great and did great! One big Hug coming your way!:)

Doug
12-24-2009, 02:34 PM
Local woman to climb Everest with one blind eye | Video | abc7.com (http://abclocal.go.com/kabc/video?id=7186816)

I went right to it! Here, to save anyone else 12 seconds (!) is the link to Cindy's story!:):):):)

Incidentally, woohoo! Go Cindy! You are a winner no matter how high you climb!

Sangye
12-24-2009, 02:51 PM
That's awesome! I tweeted the link for others to see.

Thanks for the link, Doug. Saved me a lot of digging.

Cindy
12-24-2009, 03:53 PM
Hi, That was very strange to do :confused: but I have already have had people with WG or thinking that they may have WG contacting me for doctors etc... Too cool :)

jola57
12-24-2009, 06:05 PM
Just saw the video, awsome. You look great Cndy, I have no doubt you will conquer the Everest. My thoughts will be with you every step. My hubby says the climb is fine up to 2nd base then gets trickier, take slow and easy steps, and get your own rythm. Hope the tips help. He was there in 1995.

Cindy
12-27-2009, 12:44 PM
I found this quote: It was meant for Weggies!

Life isn't about waiting for the storm to pass. It's about learning to dance in the rain! Author unknowon

jola57
12-27-2009, 09:05 PM
How true.
reach for the clouds Cindy

elephant
12-27-2009, 11:29 PM
The statement is true. Either we learn to roll with the storm or just get stuck in it.

coffeelover
12-28-2009, 06:49 AM
I found this quote: It was meant for Weggies!

Life isn't about waiting for the storm to pass. It's about learning to dance in the rain! Author unknowon

Hey Cindy,

this is my favorite quote and has been displayed in my kitchen for months now. I love it!
coffeelover

Terri
12-29-2009, 03:08 PM
Hi Cindy,
I watched on The Discovery Channel about climbing Mt. Everest. OMG
My thoughts and prayers will be with you every step of the way.

timbo vic aust
12-29-2009, 10:49 PM
Hi cindy i have'nt had the pleasure of talking to you as yet i have been an observer on the sidelines so to speak.all i can so is you go girl we are so proud of what you are doing and the same as what eveyone else has said you are not only an inspitation to yourself and others but all fellow weggies as well good luck and best wishes xxoo tim :)

Cindy
12-30-2009, 04:21 AM
Thanks everyone! It is sooooo exciting to watch the Discovery show because that will be me in April!!!! Trying to get ABC National TV to do media coverage of the actual climb in real time. So much work: Govoner's Office, Vasculitis Foundation, family, training, equipment, setting up hubby to run the business and house for 68 days, and teaching at CSUF. My mind is quit full of stuff!

But once you are on one of these big mountains it is all so worth it! The beauty, adventure, challenges, and the nature: I love it! However, this climb will be different: my solo mate and husband of 19 years will not be with me. The most difficuly thing I forsee is how to cope with being apart from him.

Sangye
12-30-2009, 09:27 AM
I bet that part is really hard, especially because you climb together so much.

elephant
12-30-2009, 09:32 AM
He sounds so proud of you.

jola57
12-30-2009, 04:59 PM
I think it will be harder for him than you. When Richard is away on his climbs or cayaking he is busy doing whatever it takes, I on the other hand sit and wander how he is doing. I know he doesn't take unnecessary risks but most of the time he is solo and without cell coverage. He was on Aconcagua a few years back but stopped about 800 feet from top due to adverse weather so I know that he values his life more than getting to the top. Our friend is there right now with a group doing a climb for prostate. Cindy, will your guide be with you on the climb and will you try for the top?

Cindy
01-01-2010, 08:04 AM
Hi jola57,

Yes it will be difficult for husband especially considering all of the factors (i.e., WG, Everest). Goods things he knows about me: like your husband I have turned around on Aconcagua due to weather and on Peak Lenin due to team mate getting frost bite (I also value life more than a summit); my husband has been with me on almost all of my climbs (just not the most extreme) and he knows my abilities; and finally, my husband knows my guide, Scott, who has been with us on all of the big mountains. Waiting back home is always hard but we will have satellite communication almost all of the time and when we do not Everest 2010 News web site tracks all the climbers. So anyone can go to this site and see the most current news from Everest.

As for me, my husband and I have done almost everything together for the last 20 plus years and being apart for just a few days is difficult (we are true soul mates). However, I will be gone for 68 days with 60 of those days on Everest. There are many days of hard work and climbing but it is the rest days, the storm days (when I am stuck in my tent), and the worse - the nights that can take down my spirit. Many Everest climbers have serious issues with being away from family for so long. Live on Everest is basic and difficult. I will be carrying a picture of my husband and daughter on me at all times: near my heart.

Good news! My friend is going to do the Everest Trek to base camp with me!!!!!! That means I will have someone I know for the first 15 days - it will make a big difference!!!!

There will be one guide for every four climbers and all climbers will have a climbing Sherpa. Scott and Mountain Trip have an excellent handle on the safety issues.

Yes, my goal is to summit, but if (for any reason) I need to turn around - I have no problem in doing that: as I have in the past on Aconcagua and Lenin.

Sangye
01-01-2010, 10:05 AM
Leave room in your backpack for all of us. We'll be there at your side. :)

jola57
01-01-2010, 04:38 PM
Yup, you can count on that Cindy, but we promise that even though our combined weight might be more that of an elephant, we will be light as a feather in you backpack. If you know where we can track your progress let us know and we will then trully be by your side. I am glad that you have a strong self preservation gene. Your husband and daughter will be your biggest companions being so close to your heart.

elephant
01-01-2010, 05:08 PM
Cindy we will be there in spirit. So excited for you.

Cindy
01-02-2010, 03:00 AM
Thanks everyone! And you will all be in the pocket of my down suit: I will have a banner to hold up for the picture of me at the summit!

Cindy
01-07-2010, 04:30 PM
Hi, This was just released on the NORD website www.rarediseases.org (http://www.rarediseases.org) I am at Mt. Whitney training.

elephant
01-07-2010, 10:45 PM
That's great Cindy. How is training going for you? Hope your doing well and feeling well.

Cindy
01-10-2010, 03:43 AM
Hi E, Training went well. I must be able to do certain rope skills and we had a lot of fun practicing. However, in a few months (on Everest) it will not be for fun - it will be quite serious. Go to my Blog: there are two pictures attached to the post under Mt Everest. Health wise, I have on-going issues that my doctors are aware of - and I keep going.

elephant
01-10-2010, 07:55 AM
Nice pictures Cindy. Keep on trucking....

Cindy
01-11-2010, 12:20 PM
Today we summited Mt. Baldy with a VF t-shirt. I hope to get this picture in my next TV interview - maybe this week.

202

Sangye
01-11-2010, 01:49 PM
Congratulations! But the picture link doesn't work... :(

Cindy
01-11-2010, 04:03 PM
Try going to my blog and look under "why donate" I will check it in the AM.
Thanks

moyan
01-12-2010, 12:01 AM
Good morning, inspired by all you determined people, I decided to take a hospital wheelchair, use it as a walker and take myself up to IV clinic on 3rd floor, a marathonwalk. I made it, first step of many to get some musclefunction back. Thanks exercise gang!

onatreetop
01-12-2010, 01:26 AM
In moderation. your body will tell you when you have had enough. Just listen carefully. Thats what i do. Congrads on the walk . It is a really big deal to get out of the bed. Enlightening too. Keep up the good work andyou will feel better in so many ways!!!!!!

Sangye
01-12-2010, 02:00 AM
Moyan, that's great. Last yr I discovered how much exercising in a pool helps me. It's still the only "real" exercise I can do, and may be for a long time. It's helped my balance, strength and flexibility. You can do so much in the pool that you can't even begin to do on land. I still can't even do many stretches on land, or have someone stretch me. But I can do them easily in the water. I also find the cool water comforting for the inflammation in general.

Cindy
01-12-2010, 08:18 AM
OK, here is the picture of me on the summit on Mt. Baldy with the VF t-shirt.

About the level of activity discussion: Every one of us is different and have unique situations. I am very lucky that I can do what I do but it does cause me issues. I have talked with my doctors about all of my activity and I am very in touch with my situation.

All of us have different "mountains" to conquer: be it Everest, walking to the door, or taking a shower. While exercise can help many thing, doing to much can be far worse.

moyan
01-12-2010, 08:55 AM
Thank you Cindy, not only am I not 25 any more, but I also harbor a serious disease. Just gotten over the denial so: Change your thinking lady and enjoy the things you can do!!

elephant
01-12-2010, 10:01 AM
I am thankful for the activities that I can do. That is how I think now. Be thankful every breath, every food you can swallow and every step you take.

onatreetop
01-12-2010, 11:37 PM
Ditto!!! The auqucize is great!!! If you have a place near you that has it. I did that for a few years too after the twins were born. They called it a no impact exercise. You work the muscle and move the joints but the joints dont strain. Only the muscle gets the workout I think. My mother in law started doing a while ago and it has helped her back and joints so much. i am very greatful for anything I can do also. My limits aren't that great yet but once in awhile my body says no way, take a brake. Everyday is a new one with so many possiblties. you just have to keep your eyes open and up!!

jola57
01-14-2010, 01:23 PM
Cindy, congrats on the last mountain. My friend just summitted Aconcagua, a group went there for a prostate cause. He is back this weekend, I will email him your link.

Cindy
01-15-2010, 03:32 AM
jola57, That is great! Aconcagua is a difficult mountain - he should be proud.

I would have liked to have gotten one more big mountain training climb in but I am out of money so I training locally now: but training is training. Off to Mt. Baldy again Saturday.

jola57
01-15-2010, 03:22 PM
I think that you have prepared very well and now just work on stamina. Whis you have plenty of already. Just let us know somehow how you are doing up there when the time comes. Either a link of maybe your husband can keep us posted.

elephant
01-15-2010, 10:54 PM
Cindy you have the mental and physical strength to endure this!

Doug
01-16-2010, 03:09 AM
Yes, I agree with Jolanta that something close to real time communication with you would be great. Too bad you couldn't use BlogTV for a nightly report! Written reports from your husband or you, as possible, would be wonderful!

Cindy
01-16-2010, 03:34 AM
Well, now that a few of you have mentioned an interest in following my climb I will tell you that there will be two (for sure) and possibly a third (in the works) method of knowing, almost to the hour, where I am on the climb.

1. I will be posting to my blog: pictures and short updates via satellite.
2. Everest 2010 News will be following our team (5 climbers, two guides, and 5 to 7 Sherpas) at Mt. Everest 2010 News Coverage (http://www.alanarnette.com/news/) this site is active now. Our team name is Explore Your Planet. My story will be posted on the site in a week or so.
3. ABC National Network wants exclusive rights to cover (for TV) my Everest climb with Diane Sawyer. This is in the works and we are not sure just how it will all work out. If I can get this secured, it will bring a lot of attention to rare disease awareness and hopefully donations to the Vasculitis Foundation.

I am working very hard to get this story out to the public. I had a newspaper interview two days ago, another one scheduled for Monday, and was just contacted by another report today.

Back to work.

Doug
01-16-2010, 03:41 AM
Crossing all fingers and toes, Cindy! What great news. I can't imagine it not having the potential for national, even international coverage.

Cindy
01-16-2010, 04:01 AM
Doug check your "notifications"

elephant
01-16-2010, 04:01 AM
Wow Cindy! That is great! Thank you so much from the bottom of my heart and all your effort to get this WG out nationally! I sent you an extra push when you climb, just incase you get worn out. :)

Cindy
01-20-2010, 03:02 AM
I am working hard to get the word out! I have had three interviews in the past few days and another one is being completed. When I get the links to the stories I will post them. I just hope the reports cover the story correctly: you just never know if they are going to put a "twist" on it.

Off to get blood work :)

Sangye
01-20-2010, 03:10 AM
Cindy, in the video from a few weeks ago (Calif news) I noticed 2 things they said that should be corrected in future interviews. They called Wegs a terminal illness. It's a potentially life-threatening illness, but not definitely.

Also, they said the joints become damaged over time. Even after severe inflammation and pain in the joints, they're not actually damaged as in RA, gout, Lyme, etc.... There's no mechanism for joint destruction in Wegs.

It's hard to control what the final interview will look like-- just thought I'd throw these corrections out there in case you're asked.

Bet you're getting pretty excited, though!

elephant
01-20-2010, 04:13 AM
Hey Cindy, thanks again! Hope your blood work is good news. Keep up the great work!

Cindy
01-20-2010, 05:53 AM
Sangje, Yes that is exactly what I meant! They added the "terminal" thing for drama and I have no editing rights. I do the interview and they edited into what they want. This last interview I HOPE will be more accurate but . . . . Expect for adding "drama" I think the reports hearts are in the right spot.

Sangye
01-20-2010, 10:13 AM
I figured they might have "drama'd" it up. As if Wegs alone isn't drama enough? :D

Cindy
01-26-2010, 03:11 AM
Here are some more media releases

1. This is the same story on two different locations (both are linked to your story).
This is the Mt. Everest 2010 climbing blog that will follow everything that happens on Everest this climbing season http://www.alanarnette.com/news/archives/363 (https://owaportal3.fullerton.edu/owa/redir.aspx?C=5df584bdfa544e86bd76430db8c24013&URL=http%3a%2f%2fwww.alanarnette.com%2fnews%2farch ives%2f363)
This is on on-line publication http://outside-blog.away.com/blog/alan_arnette.html (https://owaportal3.fullerton.edu/owa/redir.aspx?C=5df584bdfa544e86bd76430db8c24013&URL=http%3a%2f%2foutside-blog.away.com%2fblog%2falan_arnette.html)

2. Also, it is in the Cal State University Daily Titan Ailing professor aims to climb Mt. Everest|Daily Titan (http://www.dailytitan.com/2010/01/ailing-professor-aims-to-climb-mt-everest/)

I will let you know when it comes out in the OC Register and Guideposts.

I know, I know - they all take on the drama but that is what they do - and if it helps us get attention and money for research - so be it!

Lightwarrior
01-26-2010, 03:34 AM
Cindy,
One of my best friends who is a medical librarian (every Nurse Scientist should be so lucky to have a medical librarian as a close friend) sent me an article written about your journey. Good luck, I'll be cheering for you!!

elephant
01-26-2010, 03:40 AM
Cindy, I am screaming Yahoo!!!! Yippee! Stay strong, you are such and an inspiration.:)

Sangye
01-26-2010, 05:01 AM
Cindy, what's the date of the big climb (I can't remember my own last name lately--LOL)? I hope you're doing well!

Cindy
01-26-2010, 12:39 PM
I leave April 1st and will be gone 68 days to climb Everest. I can tell you how excited I am but it will be very difficult to be apart from my family for so long: not to mention climbing Mt. Everest.

I am doing well and training strong but my joints do bother me. During the climb I will be taking Napoxen which has worked in the past.

Two more articles are coming out in the next few days. AND I think I have found a great fund-raising method that the Vasculitis Foundation can set-up: It is similar to what the Red Cross is doing for Haiti: text in your donation! However, the set-up cost is $500 to the VF and they cannot afford that nor I (I still have a huge deposit due in a few days and more equipment to buy). If anyone knows of someone who might donation the set-up cost to the VF foundation let me know and I can put them in contact with the person (and it should be a tax deductible donation - I will check on that).

Sangye
01-26-2010, 01:23 PM
Cindy, be careful with Naproxen. Only take it with large amount of food. It can permanently destroy the stomach and GI lining. If you have the slightest pain after taking it, please don't take more. I had a friend who took it years ago and developed stomach pain. Her doctors ignored her and said to keep taking it. She did such severe GI damage that many years later she still can't even take an aspirin.

Cindy
01-26-2010, 01:38 PM
Thanks for the info. My doctor has already told me about this and I only take it when climbing and with lots of food.

Cindy
01-28-2010, 09:06 AM
I keep trying to get the word out.

Here is the link for the Guideposts story

http://guideposts.com/story/climb-everest-rare-diseases

Doug
01-31-2010, 09:51 AM
I keep trying to get the word out.

Here is the link for the Guideposts story

http://www.guideposts.com/story/climb-everest-rare-diseases (http://www.wegeners-granulomatosis.com/forum/redir.aspx?C=4703fd833e5249f9b97d44ff871c9039&URL=http%3a%2f%2fwww.guideposts.com%2fstory%2fclim b-everest-rare-diseases)


http://guideposts.com/story/climb-everest-rare-disease Cindy's is link has a small error! This will get you there.

(Sorry Cindy! I guessed right on it, and I was pleased to get the story.)

Cindy
01-31-2010, 10:10 AM
Thanks Doug, I corrected it. I have another story coming out on the front page of the Orange County Register on Tuesday. I just hope they wrote it correctly - it is so scary not to have editing rights.

Cindy
02-03-2010, 04:11 PM
OK this just came out and I have to say that I am not happy with the way it was presented! Please do not think I did this - my blog represents how I discuss this issue. I am saddened by this - I am trying to get attention but can not control how the story is wrote :(

She has to climb Mount Everest fast - Life - The Orange County Register (http://ocregister.com/articles/cindy-232307-disease-says.html)

elephant
02-03-2010, 10:41 PM
Cindy the article wasn't that bad. You are still getting the word out about WG disease. I think it's fabulous that you are doing this climb!

JanW
02-04-2010, 01:31 AM
I agree Cindy. I'm a journalist and I can't believe (ok, yes I can), that the reporter would get it so wrong for the sake of drama. They really make it sound like all of us are living on borrowed time and that WG is going to get us sooner, rather than later.

Cindy
02-04-2010, 02:23 AM
Thanks: I am so upset. I just got off the phone with the report and had a few things changed on the on-line version but I have not read it again today - too upsetting. Have to go to work now. Thanks for understanding!

Sangye
02-04-2010, 04:14 AM
Cindy, I know one of your goals is to bring awareness to Wegs and vasculitis in general. I disagree with the people who say you shouldn't be climbing. I think you should absolutely do whatever you can do and enjoy every moment of it. At the same time, I agree with them about people being misled.

This latest article is just one of several interviews that not only gets the facts about Wegs very wrong (treatment, disease course and prognosis) but also strongly implies that if the rest of us were just more motivated or positive, we could all go climb mountains. These articles/ interviews will be forever in search engines for people researching Wegs. If I had read them in 2006 when I was horrified at having to start chemo and massive pred, it might have put me over the edge.

You can't control what they'll write, but you can control what you tell them and how you say it. It's one thing if one reporter gets it wrong, but it's another if every reporter gets the same facts wrong and skews the story in the same direction. The underlying theme of conquest can be irresistible-- woman against mountain, and add in woman against doctors, disease, drugs and even against others with the same disease. Anything you tell them is going to feed into this. If you mention that some Weggies are criticizing you, of course they're going to include that-- makes a better story. Why even bring it up? If you say you chose life over chemo, of course they're going to think all Weggies have the same choice. Why not make it clear that the exact opposite is true for the vast majority of Weggies (ie, chemo is the only way to stay alive)?

I also suggest handing them a paper with info from the VF website (direct quotes) and points you want to highlight (eg Wegs is not terminal). They can refer to it while writing the story. If this keeps happening, I think it's worth questioning if all these interviews are really helping the cause. I'm sorry to be so blunt, but this is really upsetting to me.

Cindy
02-04-2010, 03:57 PM
I agree with you on many points. Some of the stuff they put in never came from me - that why I was so upset. No one has contacted me criticizing climbing Everest - it was a complete untruth and I had him remove it. I asked him to remove the other stuff you mention - for the reasons you stated but it was left it. I do not get into the disease info - only a little about myself. They find that somewhere else. I have never said anything about Woman vs Mountain or Disease vs Mountain. They add it for drama. My blog represents what I say to them - very different then what they print. I do, however, believe in my personal view of living life - and that is for every person, with disease or not, to decide for themselves.

Also, I am not use to dealing with the media but I am learning. THEY all like to twist the story into a "poor Cindy" thing I talk about trying to get the governor the recognize Rare Disease Day and fund-raising for VF for research: but almost without fail - they leave that out and change the focus.

Yes, I mentioned that I decided not to go the chemo/steroid route and chose (for me) I chose another path. I have never commented on anyone else. However, I am a strong believer that every person MUST do their own research from credible sources and make their own decisions about treatment. No one should just go with the recommended standard without personally making an informed choice. I believe that the doctors are there as tools for us use but the decisions are for us to make.

As far as someone using a newspaper article or a TV news story as credible information: No way! These are all the lowest form of information. That is why I always direct the media and people who visit my blog to the credible information sites.

You and I have already talked about our different perspectives on life and all we can do is agree to disagree.

As for am I doing more harm than good. You have no idea of contacts I get from WG people: all positive. My blog has 10,000's of hits from all around the world: not one negative comment. Ask yourself: am I bringing the issue into the public's eye: Yes. Will that help: Yes.

Sunday I climbed Mt. Baldy with a Rare Disease Day banner. At the summit I ask one of two men to take my picture with the banner. Then they said we are both doctors and have never heard of WG: well now they have.

I understand where you are coming from: I really do. And I was very upset this with last story but I have only had one negative comment out of hundreds. I can promise you this: I will be more careful in the future.

JanW
02-05-2010, 12:47 AM
I think that it is true that reporters are going to do their own research (some bad, some good) about the disease...they are not likely to take a sheet that the source hands them and reprint pieces (at least I would not). Where they are clearly wrong is in WG being fatal...you would be hard pressed to find any website that says that now.

As for the choosing life over chemotheraphy angle -- I think it's irresistable, particularly given how people feel about the medical/pharmaceutical complex today, particularly in the part of the country where Cindy lives. Just since I've been diagnosed I've had many people ask whether or not there are other things I can do -- besides chemotherapy --- to bring this disease under control. Let's face it, I don't look sick, haven't had any health crisises due to this disease -- people struggle to believe that it can't be cured holistically (if that is already their bent) because hey, you're not even that sick yet! And it's your body turning against itself -- just turn it back around! Sangye, I'm sure this must touch a particular sore point for you, having tried these kinds of treatments in the past, but it is Cindy's choice if she wants to tell people that this is what she did, or even say that she doesn't believe in treating the disease with steroids/mtx. They will have to make up their own minds whether a local newspaper is a more credible source than their docs or the VF.

Cindy
02-05-2010, 02:42 AM
When I was told I had WG (which was diagnosed after having a flare that took the sight from one eye), I did hours of medical research (I teach health science) comparing all treatment options (none of them holistic). I went to my doctor at UCLA and we sat down together and went down the list. Of course, at the top was chemo/steroids and then all the other medications. With my doctor's help, I decided what treatment/medication was best for how I wanted to handle my WG condition. This is the responsible way to manage your own health/life: be informed and be involved.

My view on life has always been positive no matter what comes up. So I look at having WG as the cards I was dealt and I go on living life.

I do not talk about the time in the hospital when I was having TIAs and my husband (sitting beside me) was so scared and felt so helpless or the 8 months I was very sick (so ill I could barely sit in my chair in a classroom while giving an exam (I keep falling out of it). These things happen and I go on. My focus is on the positives in life and my doctors love it. Every time I go to my doctor, he comes in the room with a smile and asked me what crazy things I have been doing now and when we are done: he leaves the room smiling.

I article was completely wrong when it stated that family members had contacted me criticizing my choices. It has been just the opposite. They have thanked me for providing a little bit on light in a dark tunnel. Most of them were parents of newly diagnosed teenagers. Their comments are on my blog.

JanW
02-05-2010, 03:21 AM
The OC Register story certainly made it seem like you rejected all pharma treatment, though, and that because you are not treating the disease it is still active within your body. Have you ever said publicly what treatment you took?

As to the idea that you don't talk about the bad things that happen -- to each his own. However I think that when you talk about the bad things that happen -- and how you overcame them -- that's a pretty powerful messasge for people to hear.


When you think about it, a reporter could easily get the idea that you don't have any bad days, but the vast majority of WG patients are actively suffering, waiting for their kidneys to fail. And if he goes to the internet and reads personal accounts, that's certainly the impression that he would get. That's the impression I got when I first came here and went to other forums. Then I had to remind myself (and the reporter should have reminder himself) that people most likely to engage on message boards on anything -- from parenting to disease support -- are going to be the ones most passionately engaged and most actively affected. If you have a few nosebleeds and some hearing loss -- and that's the extent of your WG -- you may not want to be reminded that there are others who have it much worse.

elephant
02-05-2010, 10:22 AM
Hey Cindy, this is not your fault, so don't beat yourself up. You had good intents to get the word out and sometimes it just doesn't happen the way you wanted it to. It's time now to focus on your climb and stay physically and emotionally healthy.
Sometimes crap happens and you just got to clean it the best way you can. Don't lose sleep over it.

Cindy
02-05-2010, 01:27 PM
Yes I am on medication and will never go off. I have not said that it is for insurance reasons: that is one thing I am trying to help NORD get changed for all people with rare diseases.

I do not go into detail about my situation because I have put enough of myself out there for the world to see and I am a very private person so this was a very difficult thing for me to do!

I am trying to make a statement by climbing Mt. Everest: That is how I will show people how I have managed my situation.

moyan
02-05-2010, 11:35 PM
Elephant, thanks, you said just what I wanted to say, but I am not good with words :)

elephant
02-06-2010, 09:04 AM
Moyan thanks for the compliment, there are some days I feel like I can't put a sentence together. Moyan your good with words and funny too.

jola57
02-07-2010, 05:03 PM
I am comming late in this discussion but will put my 2 cents in. Chemo, steroids, mtx and other medications are the last resort treatments. I would think that it is your life or else. Other medications can be taken that will maintain patients in the middle zone because they are in remission and will stay there for a long time. Jack is a testament to that. For others it truly is death or life of chemo and steroids. Cindy, you are the rare one, that although you did not escape unscathed, you are able to go on with minimum of what others must take in order to live. There are no right or wrong treatment routes here. We are all under doctors care and they do know best after all. Reporters will print what they want and what is salable. Holistic approach is the hot item now and if they can twist your responses to fit their agenda they will do so. Showing how this desease can disable a person and how quickly or how truly ugly the outlook for the rest of our life is doesn't make a "good read". So whatever publicity we can get is good. Just maybe mention this forum. I think that all your reporters should read some of our writings, it would open their eyes and hopefuly their minds.

Jack
02-07-2010, 07:30 PM
Other medications can be taken that will maintain patients in the middle zone because they are in remission and will stay there for a long time. Jack is a testament to that. For others it truly is death or life of chemo and steroids.
Hang on there jola. Just to make things clear -

When first diagnosed I was at death's door and it took huge doses of Cyclophosphamide and Prednisolone to knock the disease on its head in time to save me. Even then I came away with no kidney function and plenty of other damage. I then went through five years of repeat relapses when I was also treated with cyclophosphamide until I reached the point where it was deemed unsafe to give me more. I then changed my maintenance drug to the newly available Mycophenolate which did the trick and sustained my remission (in combination with steroids). The treatment is now catching up with me and I am suffering from long term side effects, but the decisions made at the time were correct and gave me many years good life. Given the choice, I'd take the same route again. Advances in the drugs available and recognition of the side effects are now leading to more measured treatment regimes so hopefully things will be better for more recent cases.

Cindy
02-08-2010, 02:34 AM
Jack, That is what is was getting at. With the new drugs and information: peopel (along with their doctors) need to make informed choices on treatment as to what is the best approach to their individual situation.

As far as telling reporters about this site: I did not do that on purpuse. I did not what to take away a place where Weggies can go and feel safe exchanging and disscussing their situations.

If all of you think it would be of some benifit, I can tell the next interviewer about this site.

Opinions?

elephant
02-08-2010, 03:06 AM
I don't mind, because I know anyone can read this ( millions of people) site. So I am ok with it.

jola57
02-08-2010, 05:52 PM
Jack, I know the hell you went thru, and did not mean to diminish that. What i meant was that once you were at a stage that mainstreem drugs were too toxic, you were put on new drugs that maintained you for a long time in the midzone. Beleive me, I am sure that for all of us in the beginning stages of our illness it is heart warming to know that we can live productive lives for a long time. You, after all, brought up your family while being ill. I was just shy of 50 when I was diagnosed and knowing that with drug maintenance I can live at least the next 25 years
inspires me to keep a positive attitude. We all will pay the price of long time drug maintenance one way or another. I can only hope that as more research is done the toxicity of the drugs will be less than it is now. I want to see my kids married, enjoy my grandkids and looking at you I can actually see this happening.

Cindy
02-19-2010, 03:27 AM
:DSince late October I have been writing letters to the Governor, Maria Shiver, the senators, and assembly in an attempt to get California to recognise February 28 th as Rare Disease Day. At the same time others have been helping through media releases and personal contacts: All trying to get some one's attention at the state level and it appears to have worked!

Asm. Jerry Hill (D-San Mateo) has introduced a California Health Institute sponsored resolution recognizing Rare Disease Day in California. The measure, Assembly Concurrent Resolution 117, will be heard in Asm. Rules on 2/18, and will be presented on the floor of the Assembly the week of 2/22.

elephant
02-19-2010, 09:25 AM
That is great news. So glad.

jola57
02-23-2010, 05:50 PM
How is the Resolution going?

Cindy
02-24-2010, 03:29 AM
Still waiting: They are voting on it sometime this week (I am told).

Terri
02-24-2010, 11:45 AM
That's Great Cindy:cool::)
Each year during Vasculitis Awareness week I put in a "letter to the Editor" in my local newspaper about Wegener's. I'm going to put in for the rare disease day for Feb 28th and then I will do another one for the Vasculitis Week also. People need to know and this is one way to get the word out.

Cindy
03-03-2010, 02:06 PM
Well, California Assembly Members Hill and Huffman introduced the bill but it did not pass. So, California has not recognized Rare Disease Day (which was last Sunday, Feb 28th) but there is always next year to try again.

On the brighter side, I am 29 days from leaving for Mt. Everest!

elephant
03-03-2010, 10:38 PM
Thanks Cindy for the news. I bet you can't wait! How are you feeling? :)

Cindy
03-04-2010, 02:48 AM
Elephant, I am going a bit crazy trying to get everything ready but I am feeling strong!

jola57
03-06-2010, 08:14 PM
Heres to a great expedition,

Cindy
03-12-2010, 05:22 PM
Today NPR braodcast an interview of me with Alex Cohen. I leave soon but I will continue to get the word out with the help of people like her and her staff: Thank you!

Southern California woman with rare disease plans to scale Mt. Everest | 89.3 KPCC (http://www.scpr.org/news/2010/03/11/local-woman-rare-disease-plans-scale-everest/)

elephant
03-12-2010, 10:40 PM
Take care Cindy and happy climbing! Thinking about you!

jola57
03-13-2010, 03:18 AM
happy trekking Cindy, may the clouds be few, sky be blue, winds be kind and rain stay away.

Sangye
03-13-2010, 10:47 AM
That was a good interview. NPR did a great job as always. Good luck on your trip!

Cindy
03-13-2010, 11:52 AM
Thanks Sanye. They still cut the entire part about NORD and Rare Disease Day and the need for research and law chages :(

Doug
03-13-2010, 01:03 PM
Cindy- I've added a few links to and comments about your plans to my account in DailyBooth. The demographics of that website are decidedly under 20, but my hope is they can be pulled into your wild and incredible plans for April 1st (not to mention after!). God bless, my internet friend, and best wishes for perfet weather and a perfect climb!

Cindy
03-25-2010, 01:26 AM
Well, I leave in 7 days. It has taken years to get to this point and I am almost ready. Going through airport securtiy should be interesting: with 68 days of medications in my carry-on bags - I may draw some attention!

ABC Network reporter for Face to Face with Diane Sawyer was here filming a few days ago. I do not know when or how many parts will air. I am trying to get them to show the first show during Vasculitis Awareness Week.

This will be my last post on this site for a while, but you can follow me on my climbing blog. I will be posting from Everest.

I wish you all the best of health and happy days (and nights).
Take care,
Cindy

Sangye
03-25-2010, 01:39 AM
Good luck-- don't worry about meds in your luggage. When I was on Lovenox (injectible heparin) I had my carry-on stuffed with the pre-loaded large syringes and no one blinked an eye.

elephant
03-25-2010, 04:52 AM
Good luck Cindy! Thinking about you and will check your website! Take care.:)

Lightwarrior
03-25-2010, 08:55 AM
God Speed Cindy, we will following your progress with pride.

Terri
03-25-2010, 12:06 PM
Cindy,
Wishing you the best of everything and yes we are all so proud of what you are doing!
I will keep you in my prayers that you can accomplish your goal safely and with out over whelming difficulty.

Doug
03-28-2010, 03:53 PM
hugs and prayers...

Cindy
05-31-2010, 01:05 PM
I everyone! I am in Hong Kong waiting for my flight to LAX. After being gone for two months: I cannot wait to see my family!!!!

I have been posting to my blog about the Mt. Everest climb - summited May 23rd. It was the hardest thing I have ever done!

I will post an event summary when I get the energy to write it. I lost 10% of my body weight during the event but I have a picture (it is on the blog) of me on the summit hold a Rare Disease Day Banner from NORD. The only other thing I had time to do on the summit was take my medication! It took 12 hours to get up from Camp 4 and 6.5 hours to get back to Camp 4 and the only rest breaks we got were when our oxygen bottles were being changed.

So, I think I am the first person with WG to summit Mt. Everest!

More later :)

Doug
05-31-2010, 01:39 PM
So, I think I am the first person with WG to summit Mt. Everest! More later :)

\Fantastic, Cindy! Congratulations on an incredible journey!

elephant
05-31-2010, 10:30 PM
Welcome back Cindy and Congrats!

DEE
05-31-2010, 11:26 PM
Well done Cindy !!!!!!!! DEEx

Lola
06-01-2010, 01:34 PM
Congratulations, Cindy! I am very proud of you. Proof positive that remission can happen!!! And thank you for exposing Wegs to the world.

Lola
06-01-2010, 01:34 PM
Actually, I didn't mean "expose" as in the plague. lol.

pberggren1
06-01-2010, 01:39 PM
We know what you meant!!

jola57
06-01-2010, 07:52 PM
An amazing feat for a well person but what an amazing achevement for someone with wegs. To stand on top of the world. Hurray for Cindy!!!!

Sangye
06-02-2010, 05:22 AM
Actually, I didn't mean "expose" as in the plague. lol.

ROTFL-- oh Lola, you're hilarious... :D

Good job, Cindy. You must be very proud of yourself.

Natalie
06-02-2010, 08:06 AM
Whoo Cindy Hi just read through this whole post wow what a trip :) congrates you have done a wonderfull thing

Cindy
06-11-2010, 05:16 AM
I went to my doctors at UCLA yesterday and all is well with the WG stuff. Maybe I was meant to climb to the Top of the World with the NORD (National Organization for Rare Diseases) banner! The dead skin on my fingers is still peeling away and the nerves will grow back in about 3 months. I posted many pictures in my blog Photo Gallery a few days ago.

Any one going to the VF Symposium in July in Long Beach, CA?

pberggren1
06-11-2010, 05:23 AM
I wish I could go and meet you and other fellow Weggies.

elephant
06-11-2010, 07:54 AM
That is great Cindy! I can't go, but love to!

jola57
06-11-2010, 05:38 PM
Are you going to be there?

Cindy
06-12-2010, 12:34 AM
I think so. They are trying to work me into some part of the program so I can tell about my Mt. Everest experience.

Cindy
06-22-2010, 03:35 PM
Hi, Check out this LA Time story :) it describes my summit climb and also gives a lot the links for information and donations to the VF.

Please leave a comment if you feel it appropriate. The writer used her personal time and tried to represent us and what we need.

http://latimesblogs.latimes.com/outposts/2010/06/local-woman-with-rare-fatal-disease-climbs-mt-everest.html

julia
06-23-2010, 06:32 AM
Nice article made me smile!
You should be very proud.

DEE
06-23-2010, 06:09 PM
read the article this morning great !! have shown it to several people
well done DEEx

elephant
06-23-2010, 10:27 PM
Great job Cindy!

Cindy
06-23-2010, 11:53 PM
Here is an international media release. They did great job of including some information and links to NORD and the VF. Trying to get word out.
Cindy Abbott of California, Fighting Rare Disease, Conquers Mount Everest (http://www.aolnews.com/nation/article/cindy-abbott-of-california-fighting-rare-disease-conquers-mount-everest/19526436)

Cindy
07-09-2010, 03:09 AM
Is anyone going to be attending the Vasculitis Foundation's Symposium in Long Beach, CA the end of July?
If yes, come by and say "Hi." I will be giving a short talk on the journey with WG and climbing Everest on Sunday (August 1st).

Cindy
07-17-2010, 02:35 AM
My daughter and I just made these gift baskets that will be part a fund-raising event at the International Vaculitis Symposium.
She is the best!
379

elephant
07-17-2010, 02:39 PM
Very nice Cindy!

Cindy
07-24-2010, 05:25 AM
Hi Everyone,

Sunday, July 25th at 5 PM Pacific time I will be the guest for a vasculitis on-line chat. You are welcome to join in. If interested here is the information:
Vasculitis Chat with Cindy Abbott, Sunday, July 25 @ 8 PM Eastern Time
In the PAN Support Support Network Chat Room
No downloads or password necessary. The chat series are open to the public.
1. Go to www.pansupportnetwork.org (https://owaportal3.fullerton.edu/owa/redir.aspx?C=021a46000234453ba719e75f5a95e71e&URL=http%3a%2f%2fwww.pansupportnetwork.org)
2. Click on JOIN/CHAT/
3. On the chat web page simply type your name in the box overtop the words “Screenname” and click LOGIN
For more information or assistance contact:
Ed Becker, Director, PAN Support Network
[email protected] (https://owaportal3.fullerton.edu/owa/redir.aspx?C=021a46000234453ba719e75f5a95e71e&URL=mailto%3aeob44%40zoominternet.net)

elephant
07-24-2010, 06:03 AM
Thanks Cindy, I will get on line.

Cindy
08-02-2010, 11:31 AM
Today (the 3rd anniversary of my diagonsis) Larry, Teshia, and I went to the 2010 Vasculitis Symposium in Long Beach, CA where I was the Motivational Speaker. As it turns got I was very inspired by the room filled with the hundreds of people attending this event. On Friday I had a meeting with the speakers' coordinator, Dianne. I had asked to see the room where I would be speaking so I could get an idea of the set-up. At the time where was a meeting in-session. I asked what the session was: it was the group discussion on Wegener's. It was amazed by how many people where in the room: maybe 100. I had never met, in person, one other person with WG. WOW!

JanW
08-02-2010, 11:34 AM
One of those people was me!

elephant
08-02-2010, 11:57 AM
Cindy so glad you made to the conference and you are an inspiration! I will go in 2012!

Cindy
08-02-2010, 12:35 PM
One of those people was me!

Jan, I wish you would have come and talked with me!!!!!!!

Cindy
09-10-2010, 01:53 AM
454
The Vasculitis Foundation used a picture of my climb for the cover of their Research Funding Report. It was taken at Camp 4 (26,000 ft) just hours before we left for the summit. I hope this gets some researchers attention :smile1:

jola57
09-10-2010, 10:36 AM
Cindy, that looks great. Who gets these reports and what are they for do you know. Is it for whoever is to support the research such as government or pharmaceutical companies?

elephant
09-10-2010, 10:40 AM
I love the cover Cindy, thanks for all that you do to support Wegs disease and the Vasculitis Foundation.

marta
09-10-2010, 02:50 PM
I love it Cindy. Truly inspirational!!!

Palmyra
09-11-2010, 01:05 AM
Cindy,

I am the mother of a lovely daughter that was diagnosed with Weg in 2006. She is currently doing well.

I too, would love to bring attention to the Vasculitis Foundation in some manner. I am drawn to your message because I am 50, and I am a "junior" mountaineer, with a few 14,000 and 13,000 foot peaks under my belt. I don't think I have the means to cover the territory you have, but I would love to take this message with me each time I summit my own small peaks. Any and all suggestions would be appreciated.

Yours,
Jane, mom of Alison, Crohn's '99, WG'06

PS, I have been away from the site for awhile, as I just bagged 3 more peaks!

Cindy
09-11-2010, 02:43 AM
Cindy, that looks great. Who gets these reports and what are they for do you know. Is it for whoever is to support the research such as government or pharmaceutical companies?

Hi Jolanta, I cannot tell from the actual report (I have a copy). Also, I cannot find it on the VF website, but sometimes things are difficult to locate on-line. I can say the report is an amazingly informative document stated past and present research and grant information.

Cindy
09-11-2010, 02:55 AM
Thanks everyone for your kind words. I have many more speaking events coming up and am working with NORD and VF for prime-time national coverage. Then there is the book I am writing. If this all works - the world will know what WG is !!! But it is taking a lot of time and energy. I have to manage my own WG stuff too. I will know more next week.

Jane, mom of Alison, I am glad your daughter is doing well. Welcome to the climbing world - it's pretty wild! I cannot rock climb any more because of the pain in the left foot. Last time I tried, I almost fell: not good. But put me in crampons and I can go :biggrin1:

The money for my climbs is a big issue but the way I look at it is I am going to have fun now. I am climbing Mt. Aconcagua with my hubby in December. You are welcome to join us. It is guided my the same company I climbed Everest with "Mountain Trip" you can go the their website and check the details. Our climb is for Dec. 20th.

Natalie
09-11-2010, 08:05 AM
Hi Cindy , your doing so well in bringing awarness to weges ! Just wanted to say GOOD ON YOU :biggrin1:

jola57
09-12-2010, 08:55 AM
Ah Cindy way to go again. Good Luck. great that you are ready to go again. What about the painful foot? My husband did the Aconcagua a few years ago. A good friend just did it last December for the Prostate foundation.

Cindy
09-13-2010, 01:11 AM
Hi Jolanta,

My foot is an issue for climbing and even walking :confused1::confused1: the MRI shows unexplained (what a surprise) fluid and inflammation along with arthritis. The only way I made it up Everest is because for most of the climb I wore 8000 meter boots that have a stiff sole - so if I do not flex my foot - no pain. We had to give up ballroom dancing - that was really sad: After 10 years my hubby and I were starting be become OK dancers.

I go next week to UCLA to find out about another MRI.

Did you husband and friend make it to the summit of Mt. Aconcagua?

Palmyra
09-13-2010, 01:20 PM
Hola Cindy, et al!

Thank you so much for being here on the forum. I am Jane, mom of Alison. I just finished climbing three 14,000 foot peaks in Colorado (Longs, Challenger Point and Kit Carson,) because I am a nutty 50 year old, and needed something fun to do over the summer.

On a more serious note, my lovely daughter Alison, was diagnosed with Weg, late summer of 2006 by the mighty Ulrich Specks of Mayo, Rochester. When he first saw my then 20 year old daughter, he was polite enough to ask her what she "wanted to do?" Her response was immediate, and a surprise to me....she replied she wanted to, "..Climb Mount Everest,"!!! Really!!!!

She had just been through an open lung biopsy after a 'cycling incident' that had revealed she had odd lesions in her lungs. I am so proud she is my daughter!

As all of you on this site know, when you reach that conclusion of diagnosis, and the horrible reality is in front of you...well, you may take to an alternative reaction. Four years later, my daughter is happily married, still cycling and has never been on cytoxin. Her last dose of Rituxin was Jan. of 2010, and she is doing very well, thank you. :-) I am sure more is ahead, but she is so strong, and because of reading all of all the posts on this site, you give me so much strength as a mother and caretaker.

I am so proud of the progress of treating this disease and it's 'unwilling' participants have made over the years. So many have been laid low, but I see and read of so much intelligence and strength on this site. I am happy to contribute when I feel it is appropriate within my own limited medical speciality.

I learn each day of all of the concerns of Wegener's. I look forward to the day when autoimmune disease is part of a distant past and the vast puzzle of AI disease is finally put to rest. Until then...peace and acceptance.

Palmyra J, mom of Alison, Crohn's disease'99, Weg,'06

jola57
09-13-2010, 04:40 PM
Yes. The foundation had some well deserved funds go into the coffers. I too have trouble with the left foot, recently had a bone scan and am waiting for a report. During the scan I saw that it was definitely a hot spot for the radioactive dye in the bones. A stiff boot is no good for me since If I wear anything too constricting I get cramps. I am sorry about the ballroom dancing, but nothing is lost, just wear your boots and start stomping square dancing :w00t:

Cindy
09-14-2010, 01:16 AM
Jolanta, Square dancing!?! Just kidding, did that when I was young. Let's compare results on the foot issue. I go on Thursday for mine.

Jane, mom of Alison, so your daughter mentioned climbing Everest - cool! Have her check out my website photo gallery.

jola57
09-17-2010, 08:18 PM
I have the results of the bone scan. The usual hot spots and definitely in my left foot. No diagnosis tho, suggestion of probable stress fructure, or infection but may need to have another CT. Surprisingly tho my whole scull is a black hot spot mess, the only white parts are my eye orbitals and my teeth. I have an appointment with my GP tomorrow. How is yours?

elephant
09-17-2010, 08:25 PM
Jolanta, it sounds like your sinuses are involved. I can't remember did you have sinus involvement?

Sangye
09-17-2010, 11:04 PM
Jolanta, is your GP the one who ordered the bone scan? I don't like those results.

Cindy
09-18-2010, 01:40 AM
My doctor was sick yesterday so I have to wait another two weeks to find out the results of my MRI.

elephant
09-18-2010, 03:37 AM
Cindy can't his/her partner give you the results?

Cindy
09-18-2010, 04:33 AM
Hi elephant,

I have a special relationship with Dr. Gorn. He has actually come to terms with who I am and my view on life (i.e., climbing Everest). So I will await his return.

elephant
09-18-2010, 05:39 AM
I am sure if it was urgent he would of called you to let you know. You are a patient person!

Cindy
09-18-2010, 06:47 AM
Absolutely.

jola57
09-18-2010, 05:58 PM
I totaly understand Cindy, stay with who you know and who knows you. Yes, my GP ordered the bone scan. I saw him today and have a referal to orthroped. Now its going to be a waiting game. Lets see how long it will take. No, I have very little nasal or sinus involvement. MMM getting too sleepy to keep going see you next day.

Cindy
10-09-2010, 05:15 AM
Usually I try and stay on the up-beat side of things but today, especially after reading Phil’s post, I am going to say that I am MAD! So many Weggies have been through so much, for so long, and still must look into an unknown future.

I have my own stuff going on (UCLA yesterday and back again next week) but my stuff minor in comparison to what other are/have experienced and I know how lucky I have been.

My goal is to raise awareness which, according to NORD and VF, has been working and I have more projects with them scheduled. I have also started speaking publically which, I have been told, has had a powerful affect on the audience.

Finally, I am in the process of writing a book which I hope to take to TV Movie or feature film. It that works, the world will know the word Wegener’s. And part of the proceeds would go to the VF.

I have won several awards which will come out in the next few weeks which will draw attention to my website.
I would like to add a section called “Weggie Stories” which would be short versions of your experiences. By short, it would somehow have to be 300 words or less. You do not need to use your name and I will not post it (unless you want me to).
I think adding more stories will help readers “feel” the experience of WG. In lay-person terms try to paint a picture of what you have gone through; make them feel what it's like.

If you are interested, send your write-up to [email protected] ([email protected]) and make sure to write that I have your permission to post it on my website www.reachingbeyondtheclouds.com (http://www.reachingbeyondtheclouds.com) and if you want your name included.

elephant
10-09-2010, 05:21 AM
Thanks Cindy, I will be happy to write my experience. I need to write it out on paper first. Hope your book is a hit and it would be wonderful to make a movie too.

marta
10-09-2010, 05:39 AM
I've gotten lost in all the cool stuff on your site Cindy. I'd be very happy to write my story in there, but I don't know how I can do it in 300 words or less - I tend to babble on too much:rolleyes1:. I would also love to have you contribute in the book that I'm trying to put together with a number of Weggie stories. I love your story and I think it's a great inspiration and would love to include it if you'd be willing to share. It can be as long or as short as you like. I've written the intro and am just trying to put mine down in a format that I think would flow well and then pass it on to anyone interested. I already have a few people who are interested in contributing, and I think it would be great to have as many as possible to show the way that WG affects everyone so differently. In my plan too all the money raised from sales of the book would go to WG research.

I can't wait to see the movie of your story by the way. So get on it :w00t:

jola57
10-09-2010, 01:25 PM
Putting it out there thaat there is this disease called Wegeners is supreme. I will write it up. Thanks and Go Cindy Go.

Cindy
11-10-2010, 03:01 AM
Hi Everyone,

Have not been here in a in a while. Balancing life can be tricky sometimes. I had a out-patient back pain block procedure last month but it did not work so I go back to UCLA tommorow for a more aggressive treatment. But when I look at the big picture of life, this is minor.

I have been doing many speaking events and received two more recognitions (with media coverage) Getting the word out is a lot of work! I am getting requests from all over the country but time and money are an issue. People are very interested in hearing more. But after the next one in Decmember I have to take a break. Things are too crazy and that can come back to bite me.

Anyway, just wanted to check in and say "HI"

julia
11-10-2010, 03:17 AM
Appreciate all your hard work. Any plans for the Chicago area. Oprah?.

Hope your treatment goes well.

Cindy
11-10-2010, 03:39 AM
Hi, I don't know yet. I am trying to string them all together for May-June ish time. As far as Oprah, I will work on that one later after her new show is established, but I need an inside contact for her producers because to apply the "normal route - on line" I have to get away all the rights to my story - which I will never do. Working with the media is tricky.

Geoff
11-10-2010, 03:53 AM
Good Luck with the media Cindy and take care not to 'over do' things and get run down.

Is the back pain a result of an old climbing injury and are you still proposing to head down to Argentina? Wishing you all the very best.

Cindy
11-10-2010, 04:26 AM
Hi Geoff,
No injury.
Severe arthritis (WG related - Docs can't say, you know how that goes).
Had to cancel Aconcauga climb because of it :sad:
I was planning on getting a picture with the VF and NORD banners on the summit to use for Rare Disease Day and Vasculitis Week - but I will think of something else.
I am getting very run down and I need to slow down. While I need to get the media stuff while I can - I cannot risk waking the sleeping (I hope) giant inside me. I had an interview yesterday and one more speaking event - then I am going to rest and just work on the book.

The book would be a fantastic vehicle for awareness and empowerment.

elephant
11-10-2010, 10:55 AM
Cindy take care of yourself, you have done enough! Your health first! I am proud of your accomplishments!

chrisTIn@
11-10-2010, 11:08 PM
Hi Cindy. I'm new here, and I'm impressed by your story.
Hope you will feel better soon!

Cindy
11-26-2010, 06:25 AM
Time to get back to work! NORD just launched their 2011 Rare Disease Day website so I have started my Feb. 28th Rare Disease Awareness Day operation. I am working on getting several types of media interviews to air/be released on Rare Disease Day. And I will be trying (again) to get California to recongize RDD. Last year I wrote at least a dozen letters to everyone form the governor down but was unable to get my state to join the other 40 states who did recognize RDD.
780

Geoff
11-26-2010, 07:26 AM
Well Cindy, from where I'm standing the guvnor's got no chance! Asta la vista Baby! Go get him Cindy.:cool:

Cindy
11-26-2010, 08:47 AM
Hi Geoff, No use with Arnold so I will focus on Senator Boxer.

Cindy
12-01-2010, 05:37 AM
Summiting for a Cure

The Cal State Fullerton newspaper just released a nice post-climb story and it includes awareness information :)
Summiting for a cure| Daily Titan (http://www.dailytitan.com/2010/11/30/summiting-for-a-cure/)

Please forgive the errors. The writer meant well just doesn't know about the disease or climbing. Both take time to learn :)

drz
12-01-2010, 07:10 AM
Summiting for a Cure

The Cal State Fullerton newspaper just released a nice post-climb and it includes awareness information :)
[url=http://www.dailytitan.com/2010/11/30/summiting-for-a-cure/]Summiting for a cure| Daily Titan[/

Please forgive the errors. The writer meant well just doesn't know about my disease or climbing. Both take time to learn :)
Looking forward to meeting some of you on Saturday!!!


Thank you for sharing this.

elephant
12-01-2010, 08:25 AM
Thanks Cindy, good article!

Geoff
12-01-2010, 08:34 AM
Congratulations Cindy, Inspirational article.

Good Luck with all your future schemes.:thumbup:

DEE
12-01-2010, 05:10 PM
thanks from me too DEEx

pberggren1
12-01-2010, 05:13 PM
thanks from me too DEEx

And this also rhymes with A to Z.:laugh::laugh::laugh:

me2
12-04-2010, 03:37 AM
Great story. Anybody who reads the newspaper expects errors. Its part of the charm. Thanks.

Cindy
12-17-2010, 05:41 AM
Just FedExed my blood and saliva samples to the Mt Sinia Hospital Wegener's Genetic Study.

I hope the cause of WG is identified, but I really hope that it is not gentic (unless there is some kind of way to fix it - I don't know about such things).

My hope is that some rare bug from deep in the Amazon jungle has bitten me and gave me WG AND that bug has now become extinct. Am I asking for too much!?!

Cindy
01-15-2011, 03:40 AM
Hi Evereyone,

Just returned home from a woking vacation. After all my husband has done for during the past three years, I rewarded him with a scuba diving trip.

With some help from the media that covered my story my idea for Rare Disease Day 2011 (Feb 28th) and Vasculitis Month (May) is to use the NORD and VF banners I took to the top of the world and take them underwater.


815
816

elephant
01-15-2011, 03:48 AM
Cindy I can't see the attachment. Glad to hear from you!

drz
01-15-2011, 07:02 AM
Hi Evereyone,

Just returned home from a woking vacation. After all my husband has done for during the past three years, I rewarded him with a scuba diving trip.

With some help from the media that covered my story my idea for Rare Disease Day 2011 (Feb 28th) and Vasculitis Month (May) is to use the NORD and VF banners I took to the top of the world and take them underwater.



815
816



The link works fine to the web site and that is a beautiful pix of you two diving in Roatan. No snow or ice there either (smile). The attachment doesn't load though.

Cindy
01-15-2011, 07:36 AM
Okay, I will try the pictures again. Fingers crossed :wink1:

818


817

elephant
01-15-2011, 08:28 AM
Now I see the pictures, nice!

Cindy
01-15-2011, 11:11 AM
I just opened the mail and the ANCA report came back "negative" - my first negative since I was diagnosed in 2007 :smile1:

elephant
01-15-2011, 12:14 PM
Great news Cindy, this year is going to be great! Congrats!

DEE
01-15-2011, 08:19 PM
Thats brilliant news DEEx

jola57
01-17-2011, 05:23 PM
Oh how wonderful Cindy. Question re scuba, did you feel any more pressure going down than before. I miss diving and would love to go but am afraid of what the pressure could do to my eyes and ears.

Cindy
01-18-2011, 02:34 AM
Thanks Elephant, DEE, and Jolanta - I just assumed I would always be positive (in the 300's) - now negative, but as my doctor said "it's only an indication of the disease is behaving."

Jolanta, Before I had my sinus surgery I couldn't dive vut now I am good to go. My ear clearing problem was connected to my sinuses - so both were solved witht one surgery. You should give it a try :)

Cindy
01-26-2011, 05:49 AM
Life is full of surprises. Last week I had a medical procedure at UCLA and CBS filmed it!

It will air this Thursday on The Doctors TV Show. Locally (LA and OC) it is channel 9 at 11 AM. I will attach the link and you can get for your local listing. Welcome to the Doctors TV Show (http://www.thedoctorstv.com/)
"How Heat Can Change Your Life"

They did not cover my WG story because of time and it wasn't the focus of that segment. Hopefully, my Everest summit picture holding the NORd banner will be shown.

The producers have contacted the Vasculitis Foundation about getting people for an upcoming show about people who have been misdiagnosed. If you would like to share your story and possibly get on the show contact the VF at [email protected] and put "The Doctors" in the subject. This is a national TV show and a great way to get the word out!!!!!

DISCLAIMER: I have no idea how it has been edited and I am more than a little apprehensive about how it will be presented.

lafounk2
01-26-2011, 06:28 AM
Thanks Cindy for sharing. I've sent an e-mail to [email protected] ([email protected]) regarding Josh's story. We'll see if I get a call. Would love to let others know what we went through and hope it will open others eyes in diagnosing this terrible autoimmune disease earlier.:biggrin1:

Cindy
01-26-2011, 06:36 AM
Josh's is story would be great!!!!! The people at CBS were very nice. Keep me posted :)

lafounk2
01-26-2011, 07:01 AM
Thanks Cindy. I will keep you posted. Thank you.:thumbsup:

Cindy
02-18-2011, 01:16 PM
International Rare Disease Day is February 28th. That morning I will be interviewed on The Dennis Miller Show about WG and Rare Diseases and Everest. Dennis Miller Radio: Home (http://www.dennismillerradio.com/page2)

To check for airing time and local radio station listings go to Dennis Miller Radio: Radio Station Finder (http://www.dennismillerradio.com/stationfinder)



844

Sangye
02-18-2011, 03:03 PM
Dennis Miller? Ugh. No thanks.

pberggren1
02-18-2011, 03:26 PM
I'm not really a fan of Miller either but if it gets the truth out there then maybe it isn't so bad.

Cindy
02-18-2011, 05:06 PM
We have to take what we can get and getting the word out is the WHOLE POINT of Rare Disease AWARENESS Day!!!!!!!!!!!!!!!!!

I have a lot of respect for differences in opinion - we don't have to agree - just get the word out!!!

You have no idea how difficult it is - so please go-with-the-flow and be happy for what we get.


Sangye, really!?! NORD supports what I do - what's up with you?

chrisTIn@
02-18-2011, 10:17 PM
Publicity is allways good.
Good luck, Cindy! :thumbsup:

elephant
02-18-2011, 10:37 PM
Glad you are getting the word out Cindy!

Geoff
02-19-2011, 12:30 AM
Good Luck for the 28th Cindy and I hope it goes well. Its important that we support any initiative that promotes awareness of our disease. Its been encouraging to read other posts on this forum relating to discoveries in the treatment of Wegeners, and 'flying the flag' as you are doing is such a positive aspect; Well Done!!:thumbup:

Sangye
02-19-2011, 01:19 AM
We have to take what we can get and getting the word out is the WHOLE POINT of Rare Disease AWARENESS Day!!!!!!!!!!!!!!!!!

I have a lot of respect for differences in opinion - we don't have to agree - just get the word out!!!

You have no idea how difficult it is - so please go-with-the-flow and be happy for what we get.


Sangye, really!?! NORD supports what I do - what's up with you?
I support what you do. I don't support Dennis Miller.

Geoff
02-19-2011, 01:39 AM
Dennis Miller? Ugh. No thanks.

This is so negative. I live in the UK and have never heard of Dennis Miller, but if he is prepared to give Cindy air time to talk about WG etc then good for him. I didnt know we were in a position to pick and choose our broadcasters.

Sangye
02-19-2011, 01:47 AM
Dennis Miller is one of the most politically charged commentators out there. He is not just a broadcaster. That is the basis for my comment.

Cindy
02-19-2011, 03:03 AM
Sangye, my misunderstanding.

It takes so much time and work and connections to get things like The Dennis Miller Show.
It will be broadcast on over 250 radio channels across the country.

Sangye
02-19-2011, 03:09 AM
I hope it goes well. :smile1:

Daggar
02-19-2011, 01:39 PM
Hello Cindy,

Your story is quite remarkable and gives hope for those who are newly diagnosed.

If "exposure" means more funding for research I'm all for it. I had no idea what WG was until my daughter was diagnosed.

In this case the "messenger" isn't as important as the "message".

Jack
02-19-2011, 11:10 PM
I have no idea who Dennis Miller is, but I hope you get a fair hearing and are able to put some points across and that it is not hijacked by some agenda of his own. This can so often be the case with Celebrity interviewers.

Cindy
02-20-2011, 03:10 AM
Hi Jack,

I know all too well what you mean. I have done several interviews in the past were I spent 20 minutes talking about WG and related issues only to see the final edited airing with all or almost all of it removed. I got so angry with one show that I almost cancelled all media interviews. But I'm glad I didn't. I just have to keep at it and hope for a good out-come.

Dennis Miller is internationally known. He has had 8 HBO comedy shows, had his own TV program for many years, written books, and now has a 3-hour daily radio talk show that airs on 290 stations across the country.

I talked this the producer and this will be a live interview - so no editing :)

I am told that I can give a list of issues I would like to talk about to Dennis and he will go from there.

It will be aired on Rare Disease Day, I will talk about WG and NORD but he is very interested in my Everest climb. That is what got me on the show - so do not be upset if that is the direction he takes it. As long as I get the RDD and WG information out on the air waves - mission accomplished.

It's strange how we cannot get someone to do a show about rare diseases. I think it would be perfect for Oprah and many other shows. I have tried but no response.

So, I take what I have to fight to get, get out what I can in the few minutes I'm given, and move on to the next one.

In the end, it all about raising awareness one step-at-a-time :smile1:

Cindy
02-20-2011, 03:18 AM
Dennis Miller is one of the most politically charged commentators out there. He is not just a broadcaster. That is the basis for my comment.

Yes he is - totally. I was nervous about this and felt much better after talking to some of his people. He is also a very compassionate man and is fascinated with Everest. In order to get us "seen" I climbed to the top of the world. That's what gets me media. Media is what we need.

Psyborg
02-20-2011, 01:59 PM
I think this is pretty cool. I'll try to see if I can find a way to listen in, not sure though.

And lets not get too political about this guys. Liberals and conservatives both get sick. Don' turn up our noses at potential sources of allies :thumbsup:

Palmyra
02-23-2011, 07:37 AM
If he is fascinated with Everest, then charge right in with the fact that this disease is a prime motivator for your climbs. I think the fact that so many have autoimmune disease(s) (are the current numbers 1 in 5?) and the public at large does not associate the huge cost these diseases have on the function of society. Individually they are rare, but when combined, the net effect is huge and disabling. Research and improved treatments would be an obvious gain for productivity and society at large. You go Cindy!