Saturday, July 10, 2010

3 Months out

Summer is here, the heat is stifling, and normally, or at least last year, that would mean that being out doors would be out of the question. Since my CCSVI Angioplasti, I have been able to tolerate the heat as well as the next person. At least those without MS. It is incredable to be able to function normally, and let my husband push the shopping cart when we go to the grocery store. There is no need any more to have the assistance of the faux walker. We all know how important that is/was.

Thursday I had my 3 month follow up and ultrasound. All the veins are flowing correctly. NO restenosis......

I have been having a few sinus headaches, but they are totally different from the MS headache that pleged me for so many years. I may have to see an ENT doctor if they don't clear up with the anitbotics. This has NOTHING to do with MS..

I would like to pass on to all the people waiting for angioplasti, or screening, all my hopes and prayers. Please keep in mind that the Doctors that are waiting for their IRB's are as frustrated and concerned as we are. They are doing everything they can to get things moving to help the MS communtiy and the Science community.

A couple of Notes:

  1. Get copies of all the tests, both on CD and the writen reports
  2. Make copies of them and hold onto the originals
  3. When getting an MRV, make sure it is of the head, neck and thoracic spine
  4. Read everything you can, But remember that not everything on the web is correct.

  5. Ask Questions, Get Answers, from your Dr.'s, and people that have had the procedure.

  6. Be as patient as you can.

The Liberated/Fixed MS Community is growing larger everyday. This is such a wonderful thing and we need to stay strong and active to show that what has started will continue to grow. I feel very strongly about helping and giving support to everyone that is seeking relief from the MSonster .. Always remember..... UNITED WE STAND, DIVIDED WE FALL ..... and some of us have fallen enough.

Thursday, July 1, 2010

A different type of MS CCSVI Journey

So many of us with MS have taken journeys to get the Liberation Treatment,even if you haven’t traveled overseas, each one of us has had a journey of some sort into a new chapter of our lives.

My new life journey started on April 2nd with the Liberation Treatment.

My time on the West Coast last week was a different type of journey/adventure. I was out there visiting people and talking about CCSVI to both MS patients and strangers that I would meet along the way. I met with some of my Face Book Friends, to share a meal, and stories. It was incredible to listen to the difficulties that some people have had dealing with Dr.'s that are not willing to listen to their patients.

As I traveled around the Vancouver area, I met with so many wonderful, positive people. Some with MS looking for information and contact with a person that has had the procedure, and a great number of people that I would meet to on the ferry, the plane, or the beach. Everyone knows someone with MS. The reaction that I received, when I explained why I was on the west coast, was very interesting. I was there to connect with people and spread the information about CCSVI. Of course, going to the fundraiser at the PINK DOOR, was an extra special event. Money was raised for the research at BNAC. with Dr. Z. There was a great turnout, and it was really nice to meet other MS patients that have had the procedure.

I had no problems walking and there was no fatigue. I walked on the beach in Parksville BC and where ever I could find one. I walked the Inner Harbor in Victoria and watched the sun set. There were no Headaches, and since I was getting lots of exercise and fresh air, sleeping was all good. The Hills in Seattle were doable, I walked down to the market from my hotel which was about 12 blocks. Coming back I walked some of it but opted for a Taxi. There is no point pushing any envelope if you don't need to.

The whole trip was so energizing and fascinating. I was welcomed everywhere I went, and felt very much at home. The people on the west coast are very warm and friendly people. I look forward to returning to the area again.