I started a blog

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

Postby CRHInv » Sat Nov 07, 2009 1:20 pm

I think the line between the two 'a' words can be fine, or quite broad. I think if you just take a little more help, this might just be a speed bump in the road. I don't know about you, but I am exhausted getting ready for the trip. Maybe that is playing into the 'feeling' I am getting from your blog.

I can't wait to read the next installment in Zamboni's research. I want to know what he knows. If it is what I think, maybe you can skip this acceptance stuff completely! (Hope I am not messing you up, I am just like you about not accepting this crap, there you go... I said it... this is all CRAP! 8O )

Anyway, use the aids you need to make things easier and ease your stress, then you can keep on with the other stuff to make/keep you strong, physically and emotionally.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Loobie, I read your blog today

Postby ozarkcanoer » Sat Nov 07, 2009 2:37 pm

Hi Loobie,

I read your blog entries from Wednesday and today (Sat Nov 7). I am very touched by what you wrote. You ARE creative. And BTW, I'm in denial.

I'm so glad you are going to Dr. Haacke in Detroit. A shorter trip for you for sure !!!! Please post here about how it goes !!!!! Especially since I am also going to see Dr. Haacke in Detroit on December 7, just one month from now !!!!!!!!!!!!!!! And I want to know your reactions to the scans and the facilities and the people, etc. etc. etc.

Thanks loads for your blog,

ozark
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Postby mormiles » Fri Nov 13, 2009 2:28 pm

Lew, I find no words of consolation. I've witnessed what you describe from the outside, never fully appreciating the effect on a man's psyche, and once again, you've given words to that inner experience. Focus on what you ARE doing, not the least of which is being a husband and father. That's pretty serious work.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Loobie » Tue Nov 17, 2009 1:48 pm

Well I finally broke down and posted some good news. My reluctance is born of concern that things will go back. I'm not only feeling the same still, but is some areas, alot better.
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Postby ozarkcanoer » Tue Nov 17, 2009 1:56 pm

YIPPEE !!!
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Postby Rokkit » Tue Nov 17, 2009 3:11 pm

Man oh man that sounds good Lew!
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Postby CRHInv » Tue Nov 17, 2009 3:35 pm

This is all sooooo terrific!! Way to go!!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby mrhodes40 » Tue Nov 17, 2009 3:53 pm

Lew
I am so glad you have made the leap of faith to recognize the things that have changed! It is good news. What wonderful changes you have had! Wow! It feels good to recount them doesn't it? I am so impressed with your walking Lew at airports! Man, yu can go places with all that function! You could start planning something for your family. We want to do something in about 18 months--have to save up after everything this year(Lord I am expensive!) :lol:

You and I have been "neck support buddies" and my neck is FINALLY in the last week not making headaches that make my eye feel like it is pushing out. I tell you things seem a lot better when you do not hurt all the time. I did a regimen entry too.

Great blog Lew
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby radeck » Tue Nov 17, 2009 7:27 pm

I'm glad to hear that you are feeling signs of recovery, Lew.
Last edited by radeck on Fri Dec 18, 2009 10:07 pm, edited 2 times in total.
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Postby bestadmom » Tue Nov 17, 2009 8:39 pm

Lew,

Your new blog post is so inspiring and upbeat. I'm happy for you, and hopeful that those of us with what seemed like permanent damage, will see improvement over and above the halting of disease activity.

Michelle
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Postby Arcee » Tue Nov 17, 2009 10:27 pm

Lew, so damn exciting! So happy for you. Hope you keep experiencing all the different kinds of improvement - - and that you keep sharing the captivating accounts.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby catfreak » Wed Nov 18, 2009 9:40 am

Lew,

I was catching up on your blog and you explain it better than anyone I know.

You need to write a book! You don't have to be as tortured as Stephen King to write a book. Just share your story.

I am glad you are seeing some improvements. I agree with you about feeling almost normal at times. I felt that way at times when we were in Cali and I was not having to stop and rest every little bit. That was so cool! The heat still gets me at times but not as bad and I too recover faster.

Anyway you always inspire me to do more and you are always in my prayers.

Cat :)
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby CRHInv » Wed Nov 18, 2009 9:42 am

you explain it better than anyone I know


Cat's right!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Loobie » Wed Nov 18, 2009 10:56 am

Thanks you guys :D . I actually, for the first time in a long time, thought about planning a vacation. Obviously not the Appalachian trail, but something where I could walk some and not have to do long jaunts and just be with people I want to interact with. My buddy that I've been staying with has another house in Sonoma and he has asked us to come out next summer and go to Chateu St. Jean and places like that where I could sit alot, but still be present.

And work. I actually signed up for some more responsibility that I'd been avoiding like the plague. That felt REALLY good!
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