There is so much going on in the world of CCSVI. And I haven't been able to keep on top of it. Concentration is one of the first things to diminish with my fatigue, and without it, I don't read much of what I see on the computer.
Everyday, my Facebook news feed is filled with videos of people who have been "Liberated" or are going to be "Liberated" - from all over the world. Every once in awhile something sticks in my brain, as I scroll though the "news" - including two Canadians (one person from each coast) who are considering filing human rights complaints over the lack of "Liberation" in Canada.
So what has me thinking of CCSVI...
Can you imagine having Primary Progressive Multiple Sclerosis, the type of MS without relapses or remissions. It runs a course that can not be altered or slowed by any medication. The annual trip to the MS Clinic only brings about negativity and disappointment: the doctor wants you to know that there is nothing he can do for you...
And as for CCSVI - it isn't scientifically proven.
Emily
Showing posts with label CCSVI. Show all posts
Showing posts with label CCSVI. Show all posts
CCSVI Rally
Posted in CCSVI, energy, MS Society on by
Today has been a down day. Lots of time spent in my bed, in my most relaxed and least energy consuming position. What is such a position...and I'm not alone in recognizing this, as I have recently discovered...no clothes, on my stomach, arms spread wide. Wearing clothes uses energy. And lately, I have spent my energy on other things, rendering clothing optional.
Yesterday afternoon, I attended a CCSVI rally at the Manitoba Legislative building. Accompanied by Jason, C-Dazzle, and Jay, I stood in front of the grand building, with more than 100 other Manitobans. CCSVI Manitoba is one of many grass roots organizations sprouting up in Canada, working for the common goal of making Chronic Cerebral Spinal Venous Insufficiency testing and Liberation available (legally) in Canada. Instead of being treated here, Canadians are traveling to India, Poland, Kuwait, and Egypt for the procedure.
Manitoba wasn't the only province or city holding a rally yesterday. And MS sufferers weren't the only ones acting on behalf of CCSVI: The MS Society of Canada took action yesterday as well, announcing that they will be asking the federal government to earmark $10 million for CCSVI research.
At the rally, we raised signs (when not warming our hands in our jackets!) and listened to a handful of speakers including: Duncan, who was "Liberated" in Poland; Jennifer, who's husband is quickly deteriorating from MS, and has had a positive MRV (strictured and collapsed jugular veins); and Manitoba's Health Minister. The common message, directed to doctors, politicians, and those with the power is this:
Yesterday afternoon, I attended a CCSVI rally at the Manitoba Legislative building. Accompanied by Jason, C-Dazzle, and Jay, I stood in front of the grand building, with more than 100 other Manitobans. CCSVI Manitoba is one of many grass roots organizations sprouting up in Canada, working for the common goal of making Chronic Cerebral Spinal Venous Insufficiency testing and Liberation available (legally) in Canada. Instead of being treated here, Canadians are traveling to India, Poland, Kuwait, and Egypt for the procedure.
Manitoba wasn't the only province or city holding a rally yesterday. And MS sufferers weren't the only ones acting on behalf of CCSVI: The MS Society of Canada took action yesterday as well, announcing that they will be asking the federal government to earmark $10 million for CCSVI research.
At the rally, we raised signs (when not warming our hands in our jackets!) and listened to a handful of speakers including: Duncan, who was "Liberated" in Poland; Jennifer, who's husband is quickly deteriorating from MS, and has had a positive MRV (strictured and collapsed jugular veins); and Manitoba's Health Minister. The common message, directed to doctors, politicians, and those with the power is this:
Remove MS from the equation, and treat people for CCSVI.
CCSVI and Me
Posted in CCSVI on by
I seem to have made up my mind for now, regarding CCSVI and me.
While I strive to understand my body...have my finger on my pulse, so to speak...and I like to learn about my disease...I don't have the resources to apply for CCSVI testing.
However, I continue to be interested in CCSVI developments, and patient stories.
One story, that I watched on You Tube, really hit home for me. When I question the accuracy of my diagnosis, I come across a person with the same challenges that I have...and she has MS.
She prepared a video, for her 20 day check-in following the Liberation Procedure. She had a list of "things that I can now do and couldn't do before I was Liberated" and it sounded so much like my life!
She is now able to do FULL grocery shops on her own, and not just pick up the necessities. And after shopping, she can dance around her house! She has had a coherent conversation with her husband, and actively participated in a local trivia challenge (something she has had trouble with because of "recall" problems). And, her heat tolerance is decent...and numbness and tingling has lessened.
That sounds like me!
But what if I were to borrow the money needed for the testing...
No where in Canada can I get the Liberation Procedure.
What if once the procedure is available in Canada, more (or different) testing is required?
*maybe veinography is best, but not offered right now
What if I don't have narrowed veins?
What if I do have narrowed veins?
So for now, I will live through people who "sound like me"...and listen to them enjoy a rejuvenation and a liberation...
Hmmm...that doesn't sounds fair...
Emily
While I strive to understand my body...have my finger on my pulse, so to speak...and I like to learn about my disease...I don't have the resources to apply for CCSVI testing.
However, I continue to be interested in CCSVI developments, and patient stories.
One story, that I watched on You Tube, really hit home for me. When I question the accuracy of my diagnosis, I come across a person with the same challenges that I have...and she has MS.
She prepared a video, for her 20 day check-in following the Liberation Procedure. She had a list of "things that I can now do and couldn't do before I was Liberated" and it sounded so much like my life!
She is now able to do FULL grocery shops on her own, and not just pick up the necessities. And after shopping, she can dance around her house! She has had a coherent conversation with her husband, and actively participated in a local trivia challenge (something she has had trouble with because of "recall" problems). And, her heat tolerance is decent...and numbness and tingling has lessened.
That sounds like me!
But what if I were to borrow the money needed for the testing...
No where in Canada can I get the Liberation Procedure.
What if once the procedure is available in Canada, more (or different) testing is required?
*maybe veinography is best, but not offered right now
What if I don't have narrowed veins?
What if I do have narrowed veins?
So for now, I will live through people who "sound like me"...and listen to them enjoy a rejuvenation and a liberation...
Hmmm...that doesn't sounds fair...
Emily
More CCSVI and My Cart
Posted in CCSVI on by
So further to my apple cart...
It has taken me some time to accept this current "cart". I have finally stopped looking back at what I did have, did do, and did plan. Don't get me wrong, I still have days where life stinks, but when all is said and done, my sub-conscious has done a lot of work to get me here. Lemons and lemonade.
I am comfortable with my life right now. I still see dangling carrots (I hang them myself!), but they aren't unobtainable: they are just enough to keep me going. I feel secure, despite having an unpredictable disease. For the most part, I don't fear the repo-man, taking away my insurance (although, after speaking to someone who has been on insurance for 10 years, it is normal to ALWAYS have that fear).
So now, I have to consider that the CCSVI investigations in Vancouver are limited to scans only - no "Liberation". Is this something that I am interested in having done?
Would finding out that I don't have stenosis upset my apple cart?
Would finding out that I do have stenosis upset my apple cart?
What would I do with the information? Is it worth spending the money ($2350 plus airfare, hotel, and food)? Is it worth someone having to come with me?
What if I told you that the waiting list is LESS than four months? And, obviously, is less than $10 000.
What if I have the scans done, as per the current official protocol (as set out by Dr Zamboni and others), only to find out in three years*, when I go for Liberation, that I have to have it all re-done?
*this is a fictional three years
I have never planned to visit Vancouver, or at least not before I visit Newfoundland.
Decisions, decisions.
Emily
It has taken me some time to accept this current "cart". I have finally stopped looking back at what I did have, did do, and did plan. Don't get me wrong, I still have days where life stinks, but when all is said and done, my sub-conscious has done a lot of work to get me here. Lemons and lemonade.
I am comfortable with my life right now. I still see dangling carrots (I hang them myself!), but they aren't unobtainable: they are just enough to keep me going. I feel secure, despite having an unpredictable disease. For the most part, I don't fear the repo-man, taking away my insurance (although, after speaking to someone who has been on insurance for 10 years, it is normal to ALWAYS have that fear).
So now, I have to consider that the CCSVI investigations in Vancouver are limited to scans only - no "Liberation". Is this something that I am interested in having done?
Would finding out that I don't have stenosis upset my apple cart?
Would finding out that I do have stenosis upset my apple cart?
What would I do with the information? Is it worth spending the money ($2350 plus airfare, hotel, and food)? Is it worth someone having to come with me?
What if I told you that the waiting list is LESS than four months? And, obviously, is less than $10 000.
What if I have the scans done, as per the current official protocol (as set out by Dr Zamboni and others), only to find out in three years*, when I go for Liberation, that I have to have it all re-done?
*this is a fictional three years
I have never planned to visit Vancouver, or at least not before I visit Newfoundland.
Decisions, decisions.
Emily
Rebi, CCSVI and My Cart
Posted in CCSVI, Rebif, Rebismart on by
So much on my mind these days!
First of all, I didn't use Rebi last night. I'm taking my moms advice, and waiting for the nurse to come and instruct me. I sure hope that she calls us soon!
Oh yes, and did I mention that the four cartridges of Rebif (12 doses) cost less than 12 pre-filled syringes? Jason and I thought for sure that it would cost more - being *NEW*.
I didn't really have time to enjoy Rebi last night anyway. I have had "CCSVI" (Chronic Cerebral Spinal Venus Insufficiency) on the brain: in particular, doppler and MRV (like an MRI but of the veins) testing. There is a surgery/medical clinic in Vancouver, that is offering MS patients the recommended protocol for diagnosing CCSVI. I shouldn't say "offering" as you do have to pay for the tests. And if you do have narrowing of the veins, the clinic does not offer the "Liberation" treatment (opening the veins through angioplasty or stents). The "Liberation" treatment is not available in Canada.
*can you see me rolling my eyes?*
But should I have the tests, and discover stenosis...I could go to New York, or Poland...or even India to have my veins opened up!
*insert false excitement here*
Had I written this blog yesterday, I would have told you how the idea of the Liberation treatment scares me. At the time, I was under the impression that the clinic in Vancouver offered a complete package: testing and repair if necessary. I knew nothing of cost or time-line, but I was mulling over the idea of adding my name to the appointment list. I envisioned a waiting list of over a year, and a cost upwards of $10 000.
I also envisioned myself with narrowed veins. From there, I had the "Liberation" surgery... I felt...well, liberated...a changed person...free of the bricks weighing down my limbs...out of the fog that smothers my brain...energized. And so I envisioned myself returning to work...doing everything that I miss, and filling in the missing pieces of my current life.
And then...seven months later...crashing. Falling back on to the couch...the fog rolls in, the bricks encase my legs...and I no longer have disability insurance. It's a nightmare.
My current apple cart - no matter how good the wheels, at least rolls along. A bit wonky, but it works. Why would I want to upset it?
Emily
First of all, I didn't use Rebi last night. I'm taking my moms advice, and waiting for the nurse to come and instruct me. I sure hope that she calls us soon!
Oh yes, and did I mention that the four cartridges of Rebif (12 doses) cost less than 12 pre-filled syringes? Jason and I thought for sure that it would cost more - being *NEW*.
I didn't really have time to enjoy Rebi last night anyway. I have had "CCSVI" (Chronic Cerebral Spinal Venus Insufficiency) on the brain: in particular, doppler and MRV (like an MRI but of the veins) testing. There is a surgery/medical clinic in Vancouver, that is offering MS patients the recommended protocol for diagnosing CCSVI. I shouldn't say "offering" as you do have to pay for the tests. And if you do have narrowing of the veins, the clinic does not offer the "Liberation" treatment (opening the veins through angioplasty or stents). The "Liberation" treatment is not available in Canada.
*can you see me rolling my eyes?*
But should I have the tests, and discover stenosis...I could go to New York, or Poland...or even India to have my veins opened up!
*insert false excitement here*
Had I written this blog yesterday, I would have told you how the idea of the Liberation treatment scares me. At the time, I was under the impression that the clinic in Vancouver offered a complete package: testing and repair if necessary. I knew nothing of cost or time-line, but I was mulling over the idea of adding my name to the appointment list. I envisioned a waiting list of over a year, and a cost upwards of $10 000.
I also envisioned myself with narrowed veins. From there, I had the "Liberation" surgery... I felt...well, liberated...a changed person...free of the bricks weighing down my limbs...out of the fog that smothers my brain...energized. And so I envisioned myself returning to work...doing everything that I miss, and filling in the missing pieces of my current life.
And then...seven months later...crashing. Falling back on to the couch...the fog rolls in, the bricks encase my legs...and I no longer have disability insurance. It's a nightmare.
My current apple cart - no matter how good the wheels, at least rolls along. A bit wonky, but it works. Why would I want to upset it?
Emily
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