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Originally posted by sugarcookie1
Starwise
Ultimately, we all have a time limit for our time in this world. Our job is to accomplish as much as possible in the time that we do have. no one can tell you when that time is up. So, the challenge becomes sanctifying each day, and living each day to its fullest.
I have a genetic disease called cystic fibrosis there is no cure..Your feelings are going to range from denial, to fear, to guilt, to anger, to sadness and to acceptance..It is almost like being at the beach, standing in the water on a windy day. A wave comes at you and almost knocks you off your feet. You struggle and regain your balance, just in time for the next wave to hit. Over time, the strength of the waves subside..
I was told id never make it to the age of 18 but guess what Ive made it to age 38..I am so thankful for every breath I take, for tomorrow it could all be gone in a blink of eye..Starwise listen to your doctor do as he says modern medicine has come a long ways i see allot of people have given you medical advice and thats fine but be careful i tried somethings that were offered to me in the past and it made me sicker please stick to what the DR has given you..
Time is like a river. You can’t touch the same water twice, because the flow that has passed will never pass again.
"Enjoy life.”peace,sugarcookie1
Originally posted by Starwise
***UPDATE***
This thread has now become my personal blog for the daily trials I am experiencing.....
I am in good spirits for the most part. Having ups and downs of course, still healing and tapering meds, although too slow for my taste, and have only been home from the hospital for a few days....
BUT BUT BUT. I was told yesterday that I needed to choose a medicine (choice between Avonox and Copaxone) to prevent relapses and a progression of the disease. I am an RRMS newly diagnosed. They want to start me on a drug that will be daily/or weekly injections FOR THE REST OF MY LIFE!!!! EST cost $30,000 a year! I have no idea how it would be paid for, if I can pay for it, more research on my part is needed for sure. Its also time for me to notify my VA rep....
I have two young kids and cannot be kept back by a relapse...........I MUST GET BACK TO WORK ASAP!!! People like me who work in the health care field understand the horrors that ARE COMING and are ALREADY HERE!! It makes me so frightened, right now I just don't know what to think or do.......
Originally posted by nixie_nox
reply to post by Starwise
You may have to consider a career change, to something that is more amicable to your condition.
thank God that starting in 2014, you can't be denied insurance for a pre existing condition. or that would be another nightmare you would have to deal with.
I did labor, I am now an assistant because I can't do labor of any kind.I also work for the government for the work flexibility.
husband is purhc
These are things you may have to consider.
Feel free to contact me if you need a sympathetic ear.
As for survival, I have come to accept that I won't. I can't lift, I can't run, I am pretty screwed. All I can do is make sure my kid is learning.edit on 21-7-2012 by nixie_nox because: (no reason given)
Originally posted by elrem48
Originally posted by Starwise
***UPDATE***
This thread has now become my personal blog for the daily trials I am experiencing.....
I am in good spirits for the most part. Having ups and downs of course, still healing and tapering meds, although too slow for my taste, and have only been home from the hospital for a few days....
BUT BUT BUT. I was told yesterday that I needed to choose a medicine (choice between Avonox and Copaxone) to prevent relapses and a progression of the disease. I am an RRMS newly diagnosed. They want to start me on a drug that will be daily/or weekly injections FOR THE REST OF MY LIFE!!!! EST cost $30,000 a year! I have no idea how it would be paid for, if I can pay for it, more research on my part is needed for sure. Its also time for me to notify my VA rep....
I have two young kids and cannot be kept back by a relapse...........I MUST GET BACK TO WORK ASAP!!! People like me who work in the health care field understand the horrors that ARE COMING and are ALREADY HERE!! It makes me so frightened, right now I just don't know what to think or do.......
Just go with your intuition for what is the best medicine to help you. I am a big believer in natural products, but you have a busy life with two little ones that need you, so I think you know what you must do. Unfortunately, when "time is of the essence" there is NO time to try this and try that. If these drugs have a good success rate, then try them....you could always stop if you're aware of negative symptoms from them. By all means log on to one of those internet groups who share your health problem, because that is first-hand accounts of how different medicines work for them. The money part is probably taking a toll on you also. I would try to apply for everything! I will keep you in my thoughts and prayers although I do not know you personally...I can relate as a fellow human being who is vulnerable to whatever life throws at me.
Possibly one of the most important medical roles for colloidal silver is it's ability to destroy deadly pathogens like methicillin resistant staphylococcus aureus, or MRSA, the flesh-eating super bug. The MRSA cure was discovered during research in the 1970s at Syracuse University by Robert O. Becker, M.D. Becker's research has been all but discredited by the FDA who helped to downplay his findings. Funding for continued research dried up in 1980, forcing Becker to close his lab and stop his research. At that time he was on the verge of huge breakthroughs in human organ and tissue regeneration.