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.
Thursday, July 1, 2010
Monday, June 21, 2010
First Day of Summer
This is just a short piece, wishing everyone a very happy and relaxing first day of summer. My summer will be starting with a wonderful trip to the west coast to visit new friends. I will also be attending THE PINK DOOR fundraiser for CCSVI research at BNAC.
I feel wonderful, although I had a sinus headache yesterday that had me a little uncomfortable. It is at times like that, that you question everything. I woke this morning feeling well rested and ready for my 10 hour work day. Life has been very busy since the Philadelphia Inquirer ran an article about CCSVI, Dr. Bonn and the three of us that were treated by him. It is interesting that one article has started people talking. My daughter and I were having our nails done on Saturday, and as we were waiting for them to dry, we were talking about my upcoming trip and some of the responses from the article. The lady sitting next to us asked it we were talking about the article that had been in the paper about MS and the angioplasty. I said that yes we were. She asked if we knew that one of the women was from Chalfont. I chuckled, and said "yes, that would be me." Even though this lady was ready to leave, she remained there for a few extra minutes just to chat with us and ask some questions. She asked Jennifer if she had seen much difference in her mother. Jen beamed up and said that her Mom was happy again.
It was nice to hear what my daughter has noticed is different with her Mom....
More to come when I am out on the west coast.
I feel wonderful, although I had a sinus headache yesterday that had me a little uncomfortable. It is at times like that, that you question everything. I woke this morning feeling well rested and ready for my 10 hour work day. Life has been very busy since the Philadelphia Inquirer ran an article about CCSVI, Dr. Bonn and the three of us that were treated by him. It is interesting that one article has started people talking. My daughter and I were having our nails done on Saturday, and as we were waiting for them to dry, we were talking about my upcoming trip and some of the responses from the article. The lady sitting next to us asked it we were talking about the article that had been in the paper about MS and the angioplasty. I said that yes we were. She asked if we knew that one of the women was from Chalfont. I chuckled, and said "yes, that would be me." Even though this lady was ready to leave, she remained there for a few extra minutes just to chat with us and ask some questions. She asked Jennifer if she had seen much difference in her mother. Jen beamed up and said that her Mom was happy again.
It was nice to hear what my daughter has noticed is different with her Mom....
More to come when I am out on the west coast.
Sunday, June 13, 2010
CCSVI causing Stress????????????
To start with the update on my status, I am still doing very well and feel great, for the most part. Yesterday I woke up with a headache and was very scared that I was falling backwards in my progress. As the day progressed, I realized that it was a sinus headache and not my MS headache. I have to come to grips with the fact that I will have the occasional headache, just as everyone does from time to time, and not to stress myself out over it.
Now onto the subject of the day. STRESS. We all know that Stress is not good for anyone let alone people with MS. As I was laying in bed the other morning, it struck me that since the announcement of CCSVI last year, some MS patients seem to be getting worse. Has anyone taken note that the added stress of knowing that there is a treatment to alleviate some of our symptoms, but yet is not allowed, may be causing undue stress on MS patients? This is not an up front, conscious, Stress, but a constant underlining condition. We all have stress that causes us some problems. I know that when there is a stressful time in my life, I can usually recognize it and change what is going on in order to lessen the affect. How will this be possible for so many people that are on waiting lists, not knowing if they will be able to have the procedure or how will they pay for it. In talking with so many people in the last few months, almost everyone as commented that they are have more problems recently. It struck me as interesting that all of a sudden people were getting worse. I thought back to before I was Liberated, and how my walk was, compared to the year before, and how my headaches had been more intense. Was this a reverse placebo affect or was it the amount of stress I was under, trying to find a doctor that would listen to me, that was causing more problems. I would have to say that it was the underlining stress.
Now that the MS Societies have announced the recipients of the funding for research, we know that the Society who's dogma is to be supportive of MS patients is really only self indulging. None of the funded researchers are doing treatments, and studying the true affects of the procedure. If this were a drug, they would be giving it to the patients and studying the positive and negative results, just as they do with all the other treatments that Pharmaceutical Companies come up with. Instead, they are studying how to test, and what to use for the testing. This would be the same as testing a new pill and first testing to see how people might swallow a pill without actually giving them a pill to swallow.
So I think it is safe to say that the Stress levels in the MS Community have just increased.
I feel compelled to only support any function or cause that has the funds going directly for the research of "CCSVI the TREATMENT".... By doing this I am looking into going to Seattle to attend the FIESTA to HELP SOLVE THE MYSTERY OF MULTIPLE SCLEROSIS on June 27th. I am also going to be traveling up to the Vancouver area to meeting with some of my new friends to talk about life after being Liberated.........
Now onto the subject of the day. STRESS. We all know that Stress is not good for anyone let alone people with MS. As I was laying in bed the other morning, it struck me that since the announcement of CCSVI last year, some MS patients seem to be getting worse. Has anyone taken note that the added stress of knowing that there is a treatment to alleviate some of our symptoms, but yet is not allowed, may be causing undue stress on MS patients? This is not an up front, conscious, Stress, but a constant underlining condition. We all have stress that causes us some problems. I know that when there is a stressful time in my life, I can usually recognize it and change what is going on in order to lessen the affect. How will this be possible for so many people that are on waiting lists, not knowing if they will be able to have the procedure or how will they pay for it. In talking with so many people in the last few months, almost everyone as commented that they are have more problems recently. It struck me as interesting that all of a sudden people were getting worse. I thought back to before I was Liberated, and how my walk was, compared to the year before, and how my headaches had been more intense. Was this a reverse placebo affect or was it the amount of stress I was under, trying to find a doctor that would listen to me, that was causing more problems. I would have to say that it was the underlining stress.
Now that the MS Societies have announced the recipients of the funding for research, we know that the Society who's dogma is to be supportive of MS patients is really only self indulging. None of the funded researchers are doing treatments, and studying the true affects of the procedure. If this were a drug, they would be giving it to the patients and studying the positive and negative results, just as they do with all the other treatments that Pharmaceutical Companies come up with. Instead, they are studying how to test, and what to use for the testing. This would be the same as testing a new pill and first testing to see how people might swallow a pill without actually giving them a pill to swallow.
So I think it is safe to say that the Stress levels in the MS Community have just increased.
I feel compelled to only support any function or cause that has the funds going directly for the research of "CCSVI the TREATMENT".... By doing this I am looking into going to Seattle to attend the FIESTA to HELP SOLVE THE MYSTERY OF MULTIPLE SCLEROSIS on June 27th. I am also going to be traveling up to the Vancouver area to meeting with some of my new friends to talk about life after being Liberated.........
Wednesday, June 9, 2010
CCSVI and the changes in Life
I am now 9 1/2 weeks from Procedure. Life is good and things are coming along bit by bit. As I stated in my last posting, New things seem to be found, that were missing. I noticed last night while writing a card for a friend who is retiring, that my handwriting has changed. It is all of a sudden more consistent and clearer. This is something that you don't think about until it happens right out of the blue. I have more control of my hands. If I had been asked if I was having problems with my hands before I was Liberated, I would have answered, No, I don't have any real problems with them. But now I know that I must have been having problems because they are working better now. It sound strange, but this falls into the area of the things you don't know you are missing until you find them again. It almost make you eager for tomorrow to see what new surprises are in store for you. I think I will have to be more in tune with what is going on so I don't miss noticing things.
One of the greatest joys these days, is speaking with other MS patients and answering questions about CCSVI and giving support and encouragement to all the people waiting to be Liberated/fixed. Those of us who have had the procedure need to be the baseline for the research. We are the proof of what can happen when the veins are opened and the blood in your brain is allowed to drain properly. I can't stress enough the importance of what we say and do to support the rest that are looking for the strength to get the CCSVI scanning and then procedure.
I am looking forward to a summer of new/renewed experiences. This is going to be fun to see how a game of Tennis affects me. I have a new, good friend that is waiting to be liberated. She was an avid tennis player and the day that she and I can play a game together will be a huge milestone, for both of us. Of course I still have to watch what I do not to injure my still recovering shoulder. Looking forward to be a GOOD SUMMER........
One of the greatest joys these days, is speaking with other MS patients and answering questions about CCSVI and giving support and encouragement to all the people waiting to be Liberated/fixed. Those of us who have had the procedure need to be the baseline for the research. We are the proof of what can happen when the veins are opened and the blood in your brain is allowed to drain properly. I can't stress enough the importance of what we say and do to support the rest that are looking for the strength to get the CCSVI scanning and then procedure.
I am looking forward to a summer of new/renewed experiences. This is going to be fun to see how a game of Tennis affects me. I have a new, good friend that is waiting to be liberated. She was an avid tennis player and the day that she and I can play a game together will be a huge milestone, for both of us. Of course I still have to watch what I do not to injure my still recovering shoulder. Looking forward to be a GOOD SUMMER........
Monday, May 31, 2010
Beginning of a Liberated Summer
It is now the unofficial beginning of summer. Mind you the weather feels like it is already July. Since my CCSVI Liberation Treatment, summer will hold a whole new meaning. I spent quite a bit of time out in the sun and heat yesterday and realized that the heat was not having an ill affect on me. I could do yard work and enjoy the outside without feeling drained, with a headache, and having to go inside, out of the heat. A Word to the Wise..... With all this new energy and stamina, be careful not to over do it. Friday, we decided to clean our small pond and get rid of the algae that had taken over. Feeling like super woman, I was standing in the bottom of the pond lifting heavy rocks, using muscles that I have not used to this degree in along time, and standing in an unnatural posture. So Saturday my body decided to remind me that I am not in the best of shape. CCSVI had given me back a wonderful quality of life, now I have to work on getting my body back in shape to go with the new blood flow.
I have found over the past 3 weeks that my memory is better and my thinking as I speak is clearer. I still see improvement in my daily activities. You don't realize what you have been missing until you find it again. It's like pulling an old coat out of the closet and finding money in the pocket. Some days it is a couple of coins, and other days it may be a 20 dollar bill.
I hope this feeling never ends.............
I have found over the past 3 weeks that my memory is better and my thinking as I speak is clearer. I still see improvement in my daily activities. You don't realize what you have been missing until you find it again. It's like pulling an old coat out of the closet and finding money in the pocket. Some days it is a couple of coins, and other days it may be a 20 dollar bill.
I hope this feeling never ends.............
Sunday, May 16, 2010
CCSVI and Spreading the Word
It has been awhile since I posted anything, and this is one of those times when "No News is Good News". Last Monday I saw Dr. Bonn and had my one month post CCSVI Liberation Treatment appointment. I also had an ultrasound to see how my veins were behaving. I am happy to report that everything is doing well. I have seen improvement in my daily activities, and my energy level is high. My husband informs me that I do not snore at all anymore, and that he checks to see if I am still breathing since it is so quiet. My liberation is allowing him to sleep better.
Being liberated gives us back so much of our quality of life, but it does not stop with just the patient. It also gives the people around us back their quality of life. Michael being able to sleep better is just a small example of that. I am also able to resume some of the responsibilities that I found to be too exhausting to do before. Simple things around the house like vacuuming, washing floors, and carrying the laundry upstairs. This gives back some time to those that have had to do it for the past few years.
On to Spreading the Word.. I still find that there are so many people that I come in contact with that have never heard about CCSVI. But Everyone knows someone with MS. Last night we were at dinner with friends from my husband's high school and the subject of my Liberation became topic of conversation. It is so important to emphasize that looking local for an Interventional Radiologist is the way to go. I feel that there are many IR's that would be interested in doing this work and that we just have to contact them. It is not just through the internet, that the word is spreading, but also by just word of mouth. I talked to a couple in Delaware last week and they knew someone who know someone that was an IR. My response was to make the calls. Go to the www.sirweb.org site and look up who is in your area.
Being liberated gives us back so much of our quality of life, but it does not stop with just the patient. It also gives the people around us back their quality of life. Michael being able to sleep better is just a small example of that. I am also able to resume some of the responsibilities that I found to be too exhausting to do before. Simple things around the house like vacuuming, washing floors, and carrying the laundry upstairs. This gives back some time to those that have had to do it for the past few years.
On to Spreading the Word.. I still find that there are so many people that I come in contact with that have never heard about CCSVI. But Everyone knows someone with MS. Last night we were at dinner with friends from my husband's high school and the subject of my Liberation became topic of conversation. It is so important to emphasize that looking local for an Interventional Radiologist is the way to go. I feel that there are many IR's that would be interested in doing this work and that we just have to contact them. It is not just through the internet, that the word is spreading, but also by just word of mouth. I talked to a couple in Delaware last week and they knew someone who know someone that was an IR. My response was to make the calls. Go to the www.sirweb.org site and look up who is in your area.
Monday, May 3, 2010
Weekend Update MS 5K Walk
It was an incredible weekend. I had lots of energy and was up early Saturday to get things planted in the yard, before the heat rose to it's predicted 90 degrees. By 9am the planting was done and it was off to the grocery store to get things for dinner. We had the pleasure of having another MS patient, still waiting to be Liberated and her husband for the evening. It was wonderful to share my experience with the CCSVI procedure and how I am feeling since the procedure. The heat of the day kept us inside, until it was dinner time and the heat was not as extreme. Then we were able to be outside in the cooler evening air. I would say that the heat still effects me, but it is difficult to be sure, since everyone was having problems with the extreme heat too hot, too soon. No one is ready for it the first of May...
It was very easy to have a full day of activity, and still have energy at the end of the day. That's right, we also uncovered the pool and opened that up for the season. Of course we did have the assistance of our almost 6 year old grandson.....
Sunday Morning started with a very early drive to Ocean City, New Jersey to meet up with two other liberated women and one almost liberated woman. This was a chance for FB friends to become face to face friends, and do some walking..... Actually we walked the 5K MS walk together. We all made it to the end of the boardwalk and back.. It was also a good chance for us to talk about the different results that each of us is experiencing since being liberated. Talking with Denise and Nasha, we could express our feelings and we knew exactly what the other person was going through. It was our own little support group. Each morning I wake up afraid that the veins have closed again and that I will be back to where I was. I found that I was not alone with these fears but we all agreed that time would tell. I look forward to my next Ultrasound to verify that things are still as good as I think they are.
After the walk I still had energy. The drive home was relaxing, even in all the Sunday afternoon traffic. I was tired at the end of the weekend, but not Fatigued, just tired from having a very full, busy weekend, and being out in the sun........
It was very easy to have a full day of activity, and still have energy at the end of the day. That's right, we also uncovered the pool and opened that up for the season. Of course we did have the assistance of our almost 6 year old grandson.....
Sunday Morning started with a very early drive to Ocean City, New Jersey to meet up with two other liberated women and one almost liberated woman. This was a chance for FB friends to become face to face friends, and do some walking..... Actually we walked the 5K MS walk together. We all made it to the end of the boardwalk and back.. It was also a good chance for us to talk about the different results that each of us is experiencing since being liberated. Talking with Denise and Nasha, we could express our feelings and we knew exactly what the other person was going through. It was our own little support group. Each morning I wake up afraid that the veins have closed again and that I will be back to where I was. I found that I was not alone with these fears but we all agreed that time would tell. I look forward to my next Ultrasound to verify that things are still as good as I think they are.
After the walk I still had energy. The drive home was relaxing, even in all the Sunday afternoon traffic. I was tired at the end of the weekend, but not Fatigued, just tired from having a very full, busy weekend, and being out in the sun........
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