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.

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.........

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........