I started a blog

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

I started a blog

Postby Loobie » Mon Jul 06, 2009 8:55 am

Well I'm finally a blogger! I started it since I have so many wonderful friends and family who just don't know how to do internet forums and they all want to stay current with how this works out. And since I'm windier than a bag of buttholes, it will give me a place to release some of my writing angst :lol: . The address is here: http://myhopefuljourneyintoactualmsreco ... gspot.com/. It's totally not about informing people about the science behind CCSVI and all about how it affects the person. I hope my fingers get sore posting good news.

I know that address is a little long, but I'm a new blogger as of this morning and I just clicked the OK box when they were suggesting website names. Believe it or not, there are all kinds of blogs using "Loobie" in the domain name. I'll shorten it up at some point, but I'm going to track here and on there. We are now down to less than a week. I'm freaking out. It's so damn awesome to keep reading Alex and everyone's improvements. I can't let my hopes get too high, but Lord this is exciting!!!!!!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Advertisement

Postby peekaboo » Mon Jul 06, 2009 9:15 am

Congrats Loobie Doobie - I went and signed up on your blog...I am new to this as well, so I will need sometome to figure it all out..ie: communicating on your blog.

I was going bonkers the week before I left for stanford...Know how you feel :)
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 3:00 pm
Location: Arizona

Postby cheerleader » Mon Jul 06, 2009 10:39 am

Nice work, Lew! I think it's great to write from your perspective, and let folks know how this impacts a real live MS patient. You're not responsible to explain the science...just share your insights and be honest about the journey...this is all moving so fast, it's good to take a step back and document what's going on in your life. Jeff's warming up the MRI/MRV machine for you right now :)
xo,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5073
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby mrhodes40 » Mon Jul 06, 2009 11:52 am

Great blog Lew!! It'll be a good thing for people. And you are so right TIMS is the place to be. I learned of abx here and was really glad to do it too. And now CCSVI and freedom to post about it and talk about it all we want. It is great. And hey you get to share your blog too! it is all good for everyone involved :D
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby catfreak » Mon Jul 06, 2009 7:12 pm

Lew,

Great blog!! Took me a hour to figure out how to post a reply. DUH!! :roll: :roll:

Keep it coming!

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.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 2:00 pm
Location: Mississippi

Re: I started a blog

Postby CureOrBust » Tue Jul 07, 2009 1:01 am

Loobie wrote: The address is here: http://myhopefuljourneyintoactualmsreco ... gspot.com/. .... I know that address is a little long, but I'm a new blogger as of this morning and I just clicked the OK box when they were suggesting website names.
just to be sure, you understand that even though the website name is long, it does not count as your first post.
User avatar
CureOrBust
Family Elder
 
Posts: 2924
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby Loobie » Tue Jul 07, 2009 4:35 am

:lol: :lol:
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby Loobie » Fri Jul 24, 2009 4:42 am

Bumped for a friend.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby CureIous » Fri Jul 24, 2009 7:25 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 2:00 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Postby Loobie » Sat Jul 25, 2009 3:34 am

Thanks Mark!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby mrhodes40 » Sat Jul 25, 2009 6:55 am

add it to your signature line so we can check in from time to time :D
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby Loobie » Sat Jul 25, 2009 8:21 am

Good idea! Plus you can post comments on there now. I went through the settings and just had to unclick a box.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby Loobie » Tue Jul 28, 2009 6:51 am

Update today with some cautiously optomistic good stuff and also some stuff about how moronic I can be at times.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby cheerleader » Tue Jul 28, 2009 7:05 am

Loobie wrote:Update today with some cautiously optomistic good stuff and also some stuff about how moronic I can be at times.


Great post, Lew! Really excited to read about the improvements in vision, balance, bladder and heat tolerance! Jeff did the over-doing-it thing the first few weeks, too. I think it's natural...you want to see if this is "for real". Jeff and Marie's tip for that Spock-pinch, level 10 shoulder pain was a wet towel inside a zip lock gallon baggie, microwaved for a minute. Place that on the shoulder, and breathe deeply. Jeff didn't want to do muscle relaxants, since he feared feeling tired...but in retrospect, Sharon's tip might be the thing to do for you. Hang in there...the pain lasts a few weeks, but the improvements will stay, and hopefully keep getting better-

a very happy,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5073
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby chrishasms » Tue Jul 28, 2009 7:50 am

123
Last edited by chrishasms on Sat Dec 05, 2009 12:56 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service