Today. Thanks to Michelle Russo Pavlica we are inspired to DO - TopicsExpress



          

Today. Thanks to Michelle Russo Pavlica we are inspired to DO SOMETHING ANYTHING about what NO ONE ELSE can do FOR US except us. HERES to YOU my beautiful CIDP and GBS friends. ALL OF YOU. Dr. Phil and Dr. Oz - here we come!!!! CIDP and GBS friends, NO MORE HIDING> SHOW THE WORLD WHAT WE HAVE BEEN THROUGH AND CONTINUE TO. Dearest Mehmet Cengiz Oz and Phil, Please take a moment to save a life. Many lives are desperately in need of both or either one of you. Please help. Yes, that was begging. LOL This letter and a hundred or more letters are coming your way FILLED WITH HEART and HOPE through absolute hopelessness and desperation. I am literally handing over to you both, Mehmet Cengiz and Phil, my heart. My heart is my CIDP & GBS’rs. When we love something with all our hearts, well, it feels like our hearts existing outside of ourselves. When we have children, this is probably the best example to how I feel about my CIDP and GBS’rs. They are my baby birdies and I am their Mama B birdie. I care about them as I do about myself. This is love, real love and I learned about what real love truly is first through losing everything this world thinks is important. Then, filling up inside with a DEEP YEARNING to NEVER LET NOT ONE OTHER PERSON live another day feeling alone like I had felt with my rare illness. This letter is for my friends, not for myself. I am taking the time to fight to INSPIRE YOU with my heart for THEM. So please listen with your heart to our story. There are hundreds of thousands in this world living with a rare illness that I know one doctor in all the world only knows the truth about, let alone not even he has the ability to uncover what our rare illness really does to us. So what is this rare illness I speak about? Well, it goes by two names CIDP and GBS. The reason it does is because of the lack of knowledge about how these two illnesses that are actually one, destroys our bodies. These two illnesses cause the same destruction to our bodies; however, they go by two different names solely to distinguish their onset and process of destruction to our bodies. The acute type of our rare illness GBS aka Guillian-Barre Syndrome. The chronic type is called CIDP aka called Chronic Inflammatory Demyelinating Polyneuropathy. CIDP & GBS are cousins to Multiple Sclerosis. CIDP and GBS like MS are autoimmune disorders but with CIDP & GBS, our bodies have begun attacking our peripheral nerves. Within the medical community and even online, the knowledge is that it’s only in our hands, fingers, feet and toes but this is NOT TRUE. CIDP taught me that we have peripheral damage throughout our bodies including our stomach, ears, eyes, and face. We have a serious problem here where biological truths are not being shared with people who are internally experiencing nerve death that ALWAYS leads to MORE destructive ILLNESSES due to CIDP! I personally live with over 10 illnesses since my diagnosis with CIDP, but that’s nothing compared to MANY CIDP’rs that develop other autoimmune on top of CIDP. Who can handle all of this? It’s surreal all the time, each day, in the life of a CIDP’r. The impossible seems to happen both in darkness and in the Light, my two friends. We, CIDP and GBS’rs, are fighters for the impossible in the LIGHT that is inspired in us through fighting the impossible in the darkness. I will share with you both what most STILL TODAY does not know, and it is there is a destructive power behind CIDP that is greater than what GBS does to a person. Imagine this for a moment. GBS comes out of nowhere and causes paralysis and even death - YET CIDP is worse? The reason is because CIDP is long term. It is a silent, invisible killer. Slowly it destroys the nerves and then these destroyed nerves lead to a breakdown in our bodies in ways doctors do not have knowledge about. This breakdown leads to development of many illnesses. WE HAVE A SERIOUS PROBLEM ON OUR HANDS, but a great opportunity for a better understanding to the significance to our nerves, but it can’t come unless through AWARENESS. Someone, somewhere has to be inspired to seek what is hidden here and not just for people with CIDP and GBS but FOR ALL MAN. Many famous people and athletes have died from GBS. The unfortunate truth is these people most likely died from GBS leading to CIDP, and still today no one knows this reality. To name a few familiar names who’ve died from GBS and CIDP: Andy Griffith (actor), Rachel Chagall (actress), Joseph Heller (author of Catch 22 and co-wrote “No Laughing Matter” about his life with GBS), Franklin D. Roosevelt (U.S. president). In 2003 doctors concluded that Roosevelt’s paralysis, long attributed to poliomyelitis, was actually Guillain-Barré syndrome. A major problem I personally experience on my site and group is the lack of knowledge leads to confusion and then to more suffering. The main concern I have is majority of doctors do not know that GBS and CIDP are greatly connected with one another and because of this, I am the sole person fighting against the brainwashing of ignorance by MAJORITY OF DOCTORS through my personal neurologists expertise knowledge that GBS leads to CIDP within two years after onset of GBS. No one knows this except Dr. Gareth Parry, myself and any CIDP/GBS’r that will listen. Most will not because they need to hear it from a doctor personally yet my experience and their experience has been doctors have absolutely no clue to what CIDP and GBS truly is or what it does to us. The reason this lack of knowledge is so destructive is because when someone is told they have GBS, they stop treatments, focus solely on diet and exercise, go back to work and are fooled by ignorant doctors that they are all better, when truth is the true struggle may still hit them so with no preparation, it does in about 80% of people who survived GBS. Worse yet, most people who recovered from GBS have doctors absolutely clueless to GBS and CIDP so they aren’t told what I was – GBS diagnosis has probability of developing into CIDP. Can you imagine the confusion, the fear many people are experiencing? Experiences like this are true darkness. No one knows what it’s like to walk in true darkness until you have, and it’s a battle with people to care about us as people in telling us the truth, but no one except my Dr. Gareth Parry or I am doing it. And the heartbreaking truth is all the suffering is solely because of the lack of awareness. So result of this? We slowly die due to lack of funding that causes a lack of interest. The world revolves around money but I don’t care because if CIDP has taught me anything, it’s taught me that even money cant do the miracles the heart can. The heart always finds a way, and that’s exactly what hundreds of hearts are doing with this letter challenge to you both. My friends, Phil and Mehmet Cengiz, I am tired, just so very exhausted from living with a rare illness that no one has taken the time to truly get to understand, not loved ones & especially not the medical community. It’s been a slap in the face that without awareness we will continue to struggle alone. I know no other illness that has fallen under the radar like CIDP unfortunately has. And yet the even sadder part about this is if ONLY people knew what we truly experience, they would be absolutely shocked, devastated and then INSPIRED. When people actually take the time to listen to what we have been through, it has the potential to change even their lives through watching how we carry on despite UNIMAGINEABLE ODDS stacked against us. The most brilliant, caring doctor of our rare illness lives in New Zealand and is now retired. Without him, we as CIDP and GBS’rs are doing this on our own and every single CIDP and GBS’r has no clue, only I know this. Only I know how little other neurologists know about CIDP and GBS. I carry around this weight and no one even knows. Worse, it takes a type of person to look up to me before they will listen. I have to patiently wait on them to feel inspired by me before I can help them. Can you imagine how heartbreaking this is? That I have knowledge but because I am not a doctor and only some want to LISTEN, they suffer more than they have to, all because I am not a doctor. It is not enough I walk in their shoes and remind them no one knows our illness better than we do, and who better to learn from than other cidp and gbs’rs. People are stuck, and not just people living with my rare illness but the entire world. Everyone has let go of their ability to improve their lives through their strength, courage and hope. As for this miracle doctor that still is hidden or doesn’t exist to hundreds of thousands of people living with CIDP and GBS, what he gave to our illness in knowledge is priceless and all it took is one person with CIDP deeply listening to his professional knowledge about CIDP and GBS’s biological process, a pain psychologists interpretation of how to process the biological and my intuition and skills to implement an ingredient of healing that this world does not know exists. I am standing up against the world, yet I have the answer to heal not just people with my rare illness but the entire world, but I am one person and a little person as who wants to listen to a person without a degree despite life showing us time and time again TRUE KNOWLEDGE comes THROUGH EXPERIENCE. I have lived to gain the knowledge and I desperately am seeking anyone to take a moment to LISTEN to me as I did the two doctors and my own intuition so we can help many many others living in this world and dying while waiting on someone else to save them. I often feel that my neurologist, Dr. Gareth Parry endured a similar uphill battle as we do as CIDP & GBS’rs, but his battle was within the medical community. The politics he expressed he experienced was partly the reason he retired. As he explained, “there is no funding for an illness no one can get rich off”. And he was and is right. People continually are dying from GBS, and eventually CIDP. CIDP doesn’t kill directly like GBS but it leads to other illnesses. Treatments and relief have come far enough to stabilize the illness where people are not actually dying from CIDP as often, but it still does happen. People experience UNIMAGINABLE losses every person who takes the time to LISTEN cannot fathom, comprehend. And worse, this inability to comprehend for those on the outside don’t know it doesn’t end there, for this illness has no end. No end with no explanation for why it exists or why it is internally killing us the way it is in a different way than what the medical community knows in knowledge. They need to be forced to LISTEN TO US to learn about all of us, every person in this world. *****This brings me to say that my heros are my CIDP & GBS’rs. There is NO OTHER in all of the world that has hung on by a thread of string day in, day out. And greater amazement, there is no hope in sight up ahead for us, yet we all find a way to keep on keeping on. THE WORLD deserves to be inspired for through hearing their experiences. Something is very very significant about CIDP and GBS. There exists a mystery to the importance of our nerves that everyone needs to want to learn more about. And frankly, I could go on and on forever. This is absolutely the briefest letter my heart could possibly create (and I’m still writing a novel, as usual), but we have so much to share that would just blow your hats off, Phil and Mehmet Cengiz. But I need to give you a window view into my personal experience to help you understand a little better. As I explained above, two names for our illness, two processes but behind that lies an even greater complication which is there are different types within CIDP in the process of damage to our nerves. CIDP ranges from mild to severe. The mild is not mild though, and the severe is not just severe. The reality is more like mild is severe and the severe is unimaginable. For myself, I was diagnosed with the CIDP type: poly-radicul-neuropathy, and it is progressive aka doesn’t improve but worsens even with treatments. I was diagnosed at age 22yrs old. I was unable to walk, bathe, hold my 3 month old daughter and this continued for two years of living bedbound with no doctor knowing how to help me. I was going to die. It was my courage and faith ALONE that saved my life. I have the MOST knowledge of anyone living in this world about GBS and CIDP thanks to Dr. Gareth Parry and other doctors and my passion, care for NOT ONE OTHER to go through what I did. And I also am THE SOLE CIDPr in remission of 10years with no relapses and continual improvements. My doctors call me the miracle child. I do not want to use this letter to speak about myself as I have done enough of this over the years through my site helping thousands of others HEAL from our illnesses destructive ways, but I do want to help you see who I am and where I am coming from. I need to absolutely open up my heart and pour it out here, but truly NOT for me. I AM DOING THIS LETTER because I NEED my precious courageous friends to find HOPE. HOPE comes in many forms, but right now this is the theme of my cidp’rs. THEY NEED THIS desperately. I cannot let them down and I BEG YOU to please listen with your heart to my letter and the many others reaching out to YOU. We have no one else. We are left alone standing in darkness with only one another to LIFT UP one another. THIS ILLNESS takes courage, absolute courage this world does not know, and it’s time for the world, the millions who watch your show to be inspired by my friends but also for my hundred thousand friends spread throughout the world experiencing the same theme I am, which is FEELING ALONE. I was inspired to create my site called LIVING WITH CIDP on Facebook 5 years ago. I took my unimaginable suffering, courage and strength to INSPIRE, BRING HOPE to others who I knew no longer had any left. I knew that darkness personally and it has become my life mission to NEVER allow one person with CIDP to stand in darkness by them self so I see myself run into the darkness and just shine my light onto them. My Light is Love, Understanding, Compassion for knowing exactly what it feels like to be them. MY LIGHT SAYS TO THEM “YOU ARE NOT ALONE”. Let me walk with you. To exist in a world that knows absolutely NOTHING about the real journey with CIDP, can you imagine? Every other illness in this world has at least solid knowledge about the progression of the illness, but ours does not. It takes a completely different course than what is known in the medical community and despite thousands speaking up, we get nowhere. I understand that your show is for the millions so my request to help a small group in comparison leaves you and your show in a predicament even if our letters touch your heart. The reality is we live in a world that exists through “majority, quantity & revenue”. I know the impossibility of getting on your show to help hundreds of thousands, but I know if the millions heard personal stories especially the greatest sufferings and inspiring stories, I KNOW our illness will force people to tune in. The only way we can make the impossible happen here is to go the path only a cidp and GBs’rs knows – through the hearts of millions. INSPIRE… I will be praying day and night for a miracle. I believe in miracles. I have experienced it with my cidp going into remission for over 10years now, seeing it beginning to happen in others. With my faith, ANYTHING IS POSSIBLE. ALL it takes is FAITH. Faith is an action and I am putting my faith into action with no reason to be this open or hopeful or inspired to open a door that doesn’t exist except through FAITH. Please know that my inspiration for this letter came from my closest and most successful CIDP friend, Michelle Russo Pavlico. She is the star here and the motivator for others including for me to take on this “Letter Challenge” to you both. This is how we work as CIDP’rs. Everyone contributes their strengths and TOGETHER we accomplish the impossible and make it POSSIBLE. CIDP teaches us to live through our hearts for we find gratefulness in the smallest things to this world, and when we do, our hearts SWELL UP and BURST. CIDP changes us, struggles change us but darkness that rises out of struggles DOES NOT have to break us. CIDP can and will teach the world we are MORE than we think we are as people in general. We aren’t helpless, not any person in this world. We are people and we have the ability to do THE UNIMAGINABLE. Our site is LIVING WITH CIDP, and our group is LIVING WITH CIDP & GBS. Both on Facebook. Any one of your staff is welcome to join us and take a glance at what our journey is about. Our group and site is unique to the rest and it’s because OPENING OUR HEARTS to OTHERS is REQUIRED. Please go to my Youtube channel as well to see video of myself speaking to my CIDP & Gbs friends. Thank you with all my heart for taking the time to read my letter and especially my friend’s letters to you. I am grateful for even this time and care from you, because even one person learning about CIDP is a step forward into AWARENESS about CIDP & GBS. With Great Love & Hope, Bridget Leko (survivor of CIDP, creator of Living with CIDP & GBS site and group) Make my day. TRULY MAKE MY LIFE with a call
Posted on: Wed, 01 Oct 2014 15:57:31 +0000

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