farbeyond1
New member
Hello,My intention is to help other people with CF get the resources they need to better cope with the lives they live. Please help me by not only reading this forum, but by also trying to better understand what it is in your life that could be better, or could have been better growing up. Sure, we are all used to living with this illness, but that does not eliminate the possibility of living with it in a more healthy, positive, productive manor. My name is Mike, I'm a 27 year old living with Cystic Fibrosis in Rhode Island. Throughout my life I've seen that doctors have done great things to keep us as physically healthy as possible. Teams have been gathered for countless experiments in hopes to some day cure our disease. Nutritionists have been brought in and recruited to help us sustain an adequate weight. All of these resources have greatly improved our standard of living over the past 20 years. My question to you and to all the people involved with the care of Cystic Fibrosis is, where is the support and help with the emotional, social and psychological aspects of Cystic Fibrosis? Rhode Island, along with many other states does not have adequate support for families, siblings, friends and patients that are living with Cystic Fibrosis. From what I have gathered, this is partially because from the early 80's we were only expected to live to age 15-20. Nobody predicted that there would be any need for help with Cystic Fibrosis patients developing into adults. Just because we deal with an illness, that may some day be life threatening, does not mean we cannot live productive, happy lives. As a child I was conditioned to the hospital environment, regularly being admitted for 2-3 week stays. The hospital although was not a place I enjoyed being, became one of the most comfortable social environments for me. Once being released from the hospital I was forced into a world that did not understand what I was going through. Teachers did not have the ability to understand what their Cystic Fibrosis patients were going through, which caused some confusion with certain behavior patters and the constant falling behind with school work. This to me, is not societies responsibility. This is the responsibility of the Cystic Fibrosis organization, the clinics that help us stay alive. To me, these facilities need to be better educated with the social aspect of living with the disease. Nobody is going to be able to help us achieve the best possible lifestyle without first helping each other. We all have a story to tell, we've all become experts of our disease. Being able to reach inside of yourself and determine how this disease has affected your life may not be easy, but if you can start to understand why, I feel it will greatly assist you in becoming a more positive person. Although there are several people in the world that have accomplished great things in life, these people too... at one point of there life probably could have used a helping hand with their emotions. I am currently living and starting to work on this problem in Rhode Island. I am currently hospitalized for 2-3 weeks and have gathered a great deal of resources in my community that will hopefully assist me with helping others. I plan on donating much of my time with writing to the experts, attending several meetings with physicians and social workers to try and stress what else is needed in the Cystic Fibrosis community. I need your help as well. You all have needs out there, please share them with me. Let me know how your life has been living with this illness and what you think could be done better... for yourself, as well as for parents with newborn children with Cystic Fibrosis. I've had the realization that to be physically healthy, you must also be mentally healthy. Finding a balance within these two areas is what I hope to achieve. I hope to some day lead an organization that will allow me to utilize my knowledge and gather resources to help our community become healthy, both physically and mentally. Please feel free to respond and or email me any time. I can be reached at "farbeyond1@cox.net." If anyone would like to chat about life, there illness, or to have a better understanding of who I am, please don't hesitate to write. Thank you for taking time to read this,Mike