From first considering the idea in 2009, I took a year of investigation and persistence getting to the point of finally undergoing that procedure in 2010, ten years after I had been diagnosed with MS -- ten-years of physical, emotional, and spiritual upheaval and renewal that I could never have imagined eleven years ago.
I consider myself one of the luckiest people alive to have met the people I have, to have had the opportunities open to me, to have been able to be with so many people here and benefit from what all of you have brought.
If I disappeared tonight, I would still be happy to have had this year, this gift. I'm not sure I would have seen this summer without the extra capacity to heal and recover, the extra strength and relief from symptoms that I gained a year ago.
Incidentally, while I see connections between vascular issues and other body systems in some symptoms, at least for many people, I am not a "ccsvi proponent" or a "ccsvi skeptic," etc. What dismissive concepts for the vibrant, real people, for the beautiful caring intelligent people and doctors I have met.
I myself am, above all else, a mom who wants to be there for my children as long as possible, a person who loves the world and wants to be part of it, and a very conservative patient. I do not advise anyone else to follow exactly what I do unless you are me.
But I know many people want to hear stories, and I believe in stories, and their collective power.
I will end with a copy of the email that I sent to my brilliant vascular doctor earlier today:
Good morning -- I am writing to say thank you, thank you thank you for giving me back my life one year ago today. I have had some definite ups and downs during the year -- I always do -- but there is no doubt that the CCSVI venoplasty you did made a major change in my multiple sclerosis. I haven't felt like this in so many years. And even with the stuff I've gone through this year, I believe the venoplasty gave me the room to recover better than ever. I am so grateful -- as a patient, as a parent, and just plain as a person.
Sometimes I imagine myself walking in and hugging you and everyone on your staff because I am so, so happy at how much better I have been this year, at how much better I feel. OK, so maybe in reality I'm still sitting in a wheelchair, and I won't be actually walking in to your facility anywhere except my imagination. But if I *can* actually imagine that, then this is a huge improvement over a year ago, when I could never have imagined such a thing, and all I saw in my future was a rapid downward spiral.
But I am now allowing myself to cautiously imagine that perhaps with enough time and nurturing and patience, it just . . . might . . . be . . . possible. Watch out, maybe someday I will walk in and surprise everyone! You have given me more than just relief from symptoms -- you have given me hope.
So thank you from me, and of course from my children. After all, if I remember right, I think they were the ones who actually gave us permission to go ahead with this procedure.
All the very best --
(now the ears of my ears awake and
now the eyes of my eyes are opened)
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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