14 responses so far ↓

• 1 Jen // Jan 7, 2008 at 7:50 pm

  My name is Jen. I am 24 years old with CF. I saw your website and thought it was good info. Luckily my CF is pretty mild . How old are you guys and what part of the country do you live in. Thanks again for the info.
  Jen

• 2 Evan Burton // Jan 7, 2008 at 8:46 pm

  Thanks for writing Jen! I am 23 years old and my brother is 26. We live in Grants Pass Oregon, just moved up from the east bay area of California.

• 3 Jen // Jan 19, 2008 at 9:20 pm

  That’s awesome! I actually currently live in the East Bay. Strange coincidence. Hope all is well!

• 4 holly // Jan 22, 2008 at 7:04 am

  Hi,
  My brother was just diagnosed with CF (he is 26). He is my best friend and I really want him to stay healthy. I read about chi-gong and I am curious if it is helping. He is really tired of Antibiotics because of the side affects he feels it does. So, he has stopped taking all antibiotics even though he now has broncheoctosis. What is your daily routines? I think he would benefit from having a daily routine to follow, but I have no idea how to help him create that…Help me learn from you…If you could send me your daily routine, from morning to night it would be so great and any information on Chi-gong therapy…We live in Southern California. He is really athletic, played football and sports all his life and is now trying to stay fit when he feels well…I appreciate this website so much…Anything you have to share would be great, especcially on those two things…Routine and chi-gong.
  Holly

• 5 Evan Burton // Jan 22, 2008 at 5:03 pm

  Dear Holly, I think the best thing for your brother would be to send him to this website to learn for himself. There is one thing I have learned over the years when it comes to helping people out with their lives and its that they have to want to help themselves. You cannot do it for them. If he is serious about staying healthy then this is a search he has to do himself. Have him read through our articles like “Succeeding with CF: a Warrior’s Guide” which outlines my routing that keeps me healthy. As far as the chi-gong thing goes, I have just recently started the classes so its too soon to tell if it works or not. I hope this helps!
  -Evan

• 6 Spencer Burton // Jan 22, 2008 at 8:56 pm

  And as a side note to Holly, please make sure your brother knows he can contact us if he has added questions on anything. We are here to help.

• 7 holly // Jan 25, 2008 at 5:09 am

  thank you, thank you, thank you…
  holly

• 8 Chris // Jan 31, 2008 at 7:40 am

  hey i, 18 years old and have been living with cf my whole life i have always been healthy cause i have always been super active with sports and my parents have always made sure that they where positive with me and that i could do any thing but i feel depressed so often cause when i look around at every one with out cf and how much easier they have it, did you ever feel dipressed because of cf and what did you do to over come it?

• 9 Axl // Jan 31, 2008 at 7:07 pm

  Ey, got the diagnose in my teenage years, last of five siblings and only one with cf. My very mild case of cf has been by curse. The first time i took down a full breath of meds, it was heaven, in a few month, i grew from 5,8 to about 6,1 , gained 20 pounds too.
  But not long after i got a bad case of depressions, which i’ve been struggeling with for 5 years. Taking medecine and going to check ups felt like a huge bother, so i went sometimes a whole year without taking my medecine.
  My mind had me going in a bad circle, way bad.
  I have read alot of litteratur about, the mind (Zen stuff), and i recognize the huge difference it can make.
  But taking my meds is like trying to keep a new year resolution to stop smoking, not that i smoke.
  I know that i should be thankful for the life that i have and the options i have.
  I have recieved alot of “TAKE IT SERIOSLY, YOU WILL GET WORSE” lectures from doctors, loved ones.
  But my motivation is on top the first few weeks i start, with workouts and meds, but then i just give up in a way. Now my lung function has gone down to 90% from 110, the last few months, and its been a kind of reality check for me.
  Ever had the same thing? And what can i do to get into the right way of thinking.
  Sorry about bad spelling and what not.
  Aksel
  20
  Norway

• 10 Regina Morales // Feb 1, 2008 at 2:14 pm

  Hello

  Thank you for what you do. I have a 3 1/2 yo little boy, Ryan, who has CF. So we are just at the beginning of our journey with CF. When I look at the two of you, this offers me hope for the future of my little “warrior”. He is the light of my life and there is nothing that I would not do for him. I also realize the importance of raising him to embrace his illness rather than being a slave to it or a so called boy in the bubble. Thank you again and please stay stong and healthy.

  Gina
  Germantown, Maryland

• 11 Spencer Burton // Feb 3, 2008 at 8:22 pm

  Chris,

  Hey Chris! Thanks for writing!

  When I was your age, I was very angry and depressed because of my cf. Its very common, because especially at your age, you just want to be normal. You don’t want to have to explain your disease to every single person that knows you have it, and you don’t want to have people view you as sick, or different.

  Today I view my cf as the greatest teacher I have ever had. Im actually grateful for it. It has taught me to be stronger, healthier and more inspiring than the average person. It has taught me that NOBODY’S life is promised to them, and the second we think we will live forever, is the second we stop living a grateful a meaningful life. DO NOT waste your precious time feeling sorry for yourself or not living your life like the normal, healthy, vibrant person that you are supposed to be. And most of all, dont believe in negative things you read or are told about cf. You dont have to be sick. Just live your life like you would normally, and do everything you can to stay healthy; mentally and physically.

  The fact that you have to work a little harder, will only make you more equipped and stronger than the rest of the people around you. Let it make you a better person. and not a weaker one. ~

• 12 Spencer Burton // Feb 3, 2008 at 8:26 pm

  Axl,

  Please read my response to Chris, the same goes for you!

  Blessings ….

• 13 Evan Burton // Feb 3, 2008 at 10:34 pm

  Chris and Aksel, You need to start seeing everything in your life as being there for a reason. You are fortunate to be blessed with this learning tool, as long as you recognize it for what it really is and not a curse. It has come into your life for a reason and the second you embrace it and ask why it has come into your life and what does it have to teach you, then you will be able to get the message and move on to bigger and better things.

  It was only until I embraced my disease as a meaningful, important part of my life that I was able to overcome the depression associated with it.

  And to Aksel, if you have 90% FEV right now then you are doing amazingly well. As far as doing your medications, you need to start seeing it a little bit differently. The fact that your doctors are telling you that your health is going to deteriorate if you dont take your meds is probably more harmful than not doing your meds. Putting that Idea into your mind is very harmful to your body. You need to focus more on being happy and doing things that make you feel healthy. If you dont feel like doing your meds makes your life better then that is your reality. Feeling guilty for not doing it is pointless and harmful to your health. If doing your meds is the only thing that makes you feel healthy then you need to start doing it, if being healthy is important to you. Some people may find that doing meds is what makes them feel good, some might just use excercise, others might meditate, while some use a combination of all of those. You need to find what works for you and makes you feel good. If your FEV was at 110% before you even knew you had CF and then went down after your doctors started telling you that you are going to get sick if you dont do meds and this coincided directly with bad thoughts about your disease then you can see exactly where the problem lies. I have seen this over and over again in CF patients, as soon as they start to actually care about their disease and worry about it they start to become more sick, where as before they even cared about their disease or did anything to care for it, they were completely healthy.

  The mind is the most powerful tool in your wellness and you should use it carefully. Where the mind spends most of its time will be exactly what is created for you in your life.

• 14 Axl // Feb 3, 2008 at 11:13 pm

  Tnx for a good answer guys. I’ve read alot on your site since i posted, and what you write makes sense. Good to read about people with the same issues and challenges in their life.
  And you do a great job in showing CF in a different light then the medical world. Keep it up’

  Aksel

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