Monday, June 14, 2010
The woman in this video is my friend. She has talked with me by video and e-mails. This is not the same beautifully spirited woman I saw on my monitor a week ago. She wanted to share with me the joy that videos I had posted on Youtube had given her hope. She was happy, smiling, articulate and beaming with excitement that maybe she could find an end to her suffering. It is unbearable at times to hear the stories on PLM, FB and other MS websites about the life sucking menace of Multiple Sclerosis. I have often turned my computer off in tears after trying to interact with members as we support each other.
I am going to be there when she has this procedure done, even if I have to beg for frequent flyer miles. My quest for others is going to be narrowly focused from now on. The NMSS just slapped all of us in the face. Does anyone here really believe they are out to help you? They are taking the money that many of us have helped to raise so they can pay their hand picked doctors to disprove Dr. Zamboni's work. If you have been on another planet recently, you may want to catch up on the real world of Multiple Sclerosis. Do you think this will not affect you? If so, you are either living in an alternate universe, or are so comfortable with your MS that you don't care. I have heard over and over in posts and threads everywhere from the people who have had MS for so long that they have just given up. They have taken drugs, treatments and therapies that have done little to stop the progression of their condition that they don’t want to start over. We have been promised breakthroughs and cures for decades.
Some of you that understand what is happening with CCSVI and have taken steps to push ahead. The only hitch is that the focus has been on one doctor, one study, and one link to freedom. Buffalo , San Diego and Kuwait are not going to fix us. Do you have a clue how many people are really going to be able to have this procedure in the United States? As wonderful as Dr. Hubbard and Buffalo have been, they can't help everybody. They don't want to. How can they? They have their protocol, studies and political garbage to muddle through. Just like any medical breakthrough, there is money to be made here. Doctors are not doing this out of the kindness of their hearts because they love and believe in you. They want your money. Everybody wants money. The motivation for many is, of course to help MS patients, but that would get 0 procedures performed.
Because the NMSS made their exciting, promising announcement, clinics that YOU could have gone to for help in the very, very, near future are closing up shop. That includes the doctor who performed my procedure and four others I was involved in. Dr. Miller made it clear that this pitiful sum of money will be used for the purpose of disproving Dr. Zamboni’s original work entirely. There are millions of dollars at stake for thousands of people when liberated patients stand up and say "I am liberated from the cancerous progression of this scourge." We are not foolish bull headed idiots trying to rock the boat. We are victims of MS who are trying to burn the boat and end this agony.
Even the costs quoted for the testing and procedure in this country have been grossly inflated. To those of you are grabbing the first oar in the water, I salute you. I am proud of all of you for pushing ahead in spite of all the obstacles. How can anyone here not see the enthusiasm since people like Paul, Denise, and Tim have proven their liberation? What about me? I have been a part of you for a long time traveling the same road of pitfalls, expensive medications and disappointments. Do you doubt what you see right in front of your faces? Good Lord, I have been posting, learning, growing and helping all I possibly could. I argue with you, try to kiss and make up, but above all, I care deeply about each and every person on this website. Even the ones who have been openly hostile and just plain mean. We have MS. We have the every right to be an angry and temperamental once in awhile! My entire files of medical records, diagnostic testing, and treatment were offered for the taking and rejected.
Applaud all the DMDs, Tsybari, LDN, bee venom and cocoa butter you like. Most people on DMD's who have been liberated aren't stopping these drugs and throwing them in the trash. We are being bold, but not brash.
I thank all of you for the support and kind words since my procedure. You have been wonderful and are helping me and many other people lighten the load of providing links, information and encouragement. I am improving every day. I went to a movie last night for the first time in six years without the ringing in my ears, the halo of lights burning my eyes and the incredible headaches I got EVERYTIME I gave the theater another try. I haven't seen the end of a movie for so long, that I have to wait for the DVD. That may not mean a thing to anyone else. It means the world to me.
I apologize for my outburst, but I am angry. I am not suffering from emotional lability, depression, MS fatigue or cog fog. Perhaps a tad of anxiety and major PISSED off.
The next time you donate your money to the NMSS, volunteer to lick envelopes, organize a fundraiser or do a lap dance for them at one of their famous dinners, be sure to thank them for the one chance that the woman in this video had to have her procedure done NOW. Out of all the ones a few of us wanted to try to get approval for, she was the one we were focusing on.
The hell with going back to my hobbies and thoughts of working again. There are more important ways to spend my time. This is the beginning.
Have a great day.