Cece's turn

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby AlmostClever » Mon Jan 31, 2011 11:06 am

Cece wrote:Countdown: 12 days away...

See, like an old hotel, I skipped right past the number 13. Not taking any chances with bad luck...and I was busy yesterday with other things, like secret projects and having the flu.

I've always considered myself lucky. After getting diagnosed with MS, I had to reconsider that. Even if I still felt lucky and fortunate and happy, MS is about as bad-luck as it gets.

CCSVI, on the other hand, is good-luck. When we go to get our dopplers or our MRVs, we are hoping for CCSVI to be found. Any bad-luck in CCSVI happened back in the womb; the good-luck is right now, when CCSVI is found, because CCSVI can be treated.

There was a study on luck that I read about in a magazine a few years ago (Scientific American? Psychology Today? Something along those lines.) The researchers had the participants fill out a survey to assess how lucky they considered themselves. Then they gave them a newspaper and asked them to count how many times something, like the letter T, appeared in the headlines throughout the newspaper. On the second page there was a box that said, "The Letter 'T' appears 63 times in this newspaper." The people who considered themselves lucky were much more likely to notice that.

So, those of us here who are lucky, perhaps it's just that we are paying attention. 99% of Americans have not yet heard of CCSVI, but we have, and we've got it, and we're getting treated. We are the lucky ones.


Feeling lucky for you, Cece!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Cece » Mon Jan 31, 2011 11:47 am

thanks, AlmostClever! :)

This is the first time I've ever thought I might have need of a blog!
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Postby wobbly » Mon Jan 31, 2011 6:22 pm

peace of cake / very cool your going 2 the dance /STAY STRONG 8O 8O 8O
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Cece's treatment

Postby tiredloulou » Mon Jan 31, 2011 8:16 pm

amazing, look at all the good wishes , all the hard work and homework you did for us will pay off for you

your an inspiration............only good

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Postby newlywed4ever » Tue Feb 01, 2011 3:34 pm

Cece - yep, we're indeed lucky!! AND the last question Dr Sclafani asked me prior to going into the procedure room was "Do you consider yourself lucky?" My answer: ABSOLUTELY!
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Postby Drury » Tue Feb 01, 2011 8:04 pm


I have not been on here for a while but delighted that you finally have a fixed date for treatment. I would give anything to be there when you finally meet Dr. Sclafani!!!

Wishing you the very best and look forward to hearing how it all went.

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Postby shoosh » Wed Feb 02, 2011 10:02 am

So happy for you! You deserve only the best! You have helped us all so much!
God Bless.
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Postby HappyPoet » Wed Feb 02, 2011 11:46 am

Cece wrote:This is the first time I've ever thought I might have need of a blog!

Cece, you don't need a blog -- you are now the de facto leader of TIMS-CCSVI, despite your denials.

Just keep doing what you always do, Cece, and TIMS-CCSVI will stay a very vibrant, vital, valuable, and venerable virtual venue for visitors viewing the vast, voluminous vault of venous, valvular, vertebral, and ventriclular vinformation. [not J, v=16]
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Postby mag00 » Wed Feb 02, 2011 12:41 pm

va va voom ;)
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Postby hopeful2 » Wed Feb 02, 2011 10:50 pm

When are you flying to NY? I'm hoping this storm runs its course quickly (roads get plowed and de-iced) and then things stay calm for your upcoming trip! The countdown continues---thinking of you. :)
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Re: Cece's turn

Postby drbart » Thu Feb 03, 2011 12:07 am

Cece wrote:Countdown: 16 days away :D

Yay! Glad to see it's finally your turn, wishing you the best of results.

Thanks always for your thoughtful comment and research.

And, gosh, try not be too afraid of this dangerous and potentially life-threatening procedure.
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Postby Cece » Thu Feb 03, 2011 8:16 am

Countdown: 9 days away….

My Arixtra is expected to come in at the pharmacy today.

My gp, who heard about CCSVI from me last spring, now got a chance to see my MRV with its blatant jugular stenoses. That is one empowering "pretty picture" to pull out.

By the end of the day, after I hear from Deb in billing, I plan to get my airline tickets. Last summer I applied for a credit card just to get the free miles sign-up bonus. Even on short notice, those miles are good for the days I'm traveling, it's enough to get the three of us out there. And back again, too, always an important consideration.

It's stressful this week pulling everything together on short notice but, at the same time, how very, very, very exciting.

I have received more well wishes here and by pm than I'd have ever imagined. Thank you and, yes, I'll let you all know how it went as soon as I know myself.

I am glad my countdown can now be measured in days instead of months.
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Postby newlywed4ever » Thu Feb 03, 2011 8:42 am

So many counting down with you! :D
FYI: http://bedbugregistry.com/search/hotel/l:brooklyn-NY/
Check out for bed bug infestation... (I will also post this on the Brooklyn Experience thread) Hotel LeBleu is NOT on the list.
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Postby KikiT » Thu Feb 03, 2011 12:06 pm

Cce, so excited for you. I am just sorry I cannot meet you this trip. I came down to Florida for the winter because I am in prison in NY with weather, especially this year. I am awaiting my turn in a few months. If you ever come for a follow up, please let the NYorkers know. I would love to meet you and am sure others would also.
You will do great LuckLady!!!!!!!!!

Kiki :D
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Postby Cece » Fri Feb 04, 2011 12:01 pm

There's been so much snow this year, Kikit. It is a shame though not to meet up. I'll probably stay local for follow-up. But I do love NYC, especially in the warmer months. We were there just once, in June a few years ago. We stayed in Manhattan and walked everywhere, I loved it.

Newly, ugh, bedbugs!! Who needs that on top of everything else!

The countdown today is at eight days and the excitement is that everything is now cleared and I am absolutely good to go!!!!!
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