Comments on: My Story http://saltyandsweet.org Daily life fighting Cystic Fibrosis and Cystic Fibrosis Related Diabetes. Sat, 05 Jun 2010 21:05:51 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: Jim Jando http://saltyandsweet.org/my-story/comment-page-1/#comment-14 Jim Jando Thu, 12 Jun 2008 00:17:34 +0000 http://saltyandsweet.wordpress.com/my-story/#comment-14 Hi Aspen I am glad that I was able to read your blog. It is nice when there is someone with cf as sucessful as you. I think parents who find out their children have cf, think that it is a death sentence and they will not have any sense of a normal life get hope when they hear about you. I am 39 years old now and even though I had to go on disability, I am not going to stay that way for the rest of my life. I have recently increased my pft's from 38% to 49%, and also started a new internet business that I will not have to work full time. I live in Michigan where we can get insurance to cover all cf expenses reguardless of income. Cf is a big part of our life, but it doesn't have to consume all of our life. I hope we can stay in touch. Thanks Jimmy J Hi Aspen
I am glad that I was able to read your blog. It is nice when there is someone with cf as sucessful as you. I think parents who find out their children have cf, think that it is a death sentence and they will not have any sense of a normal life get hope when they hear about you. I am 39 years old now and even though I had to go on disability, I am not going to stay that way for the rest of my life. I have recently increased my pft’s from 38% to 49%, and also started a new internet business that I will not have to work full time. I live in Michigan where we can get insurance to cover all cf expenses reguardless of income. Cf is a big part of our life, but it doesn’t have to consume all of our life. I hope we can stay in touch.

Thanks
Jimmy J

]]> By: Christine http://saltyandsweet.org/my-story/comment-page-1/#comment-10 Christine Sat, 26 Apr 2008 09:28:43 +0000 http://saltyandsweet.wordpress.com/my-story/#comment-10 HI Aspen! I am almost 19 and I have CF. Lately it has been really hard on me. Its been really overwhelming, and its hard to know where to turn. I was diagnosed with CF at birth so its always been my life, but as soon as I got to be about 12 and older Ive been really up and down. I think I have had about 8 PICC lines and for the past 2 years I have had diabetes that they tell me is from taking the steroid medrol. Well I guess if I can ask a question is, even though I have CF sometimes I feel like I dont know a lot about it. I know a lot on how it affects me, but not even really the details. But anyways I guess I've just been scared latley because it does seem like I get sick more often, and the hard part is cause I don't get the flu, I get something they dont know. Im scared of antibiotic resistance and that I am allergic to a lot of antibiotics, so I feel like my options get worse every day. But I wanted to let you know that I enjoyed reading about how much food we can eat HAHA I eat seriously every hour I am awake. But I also think I am fat (recovering anorexic for about 6 years now) so how do you maintain a good body image and stay so poised? I try not to worry about everything, but I hate how much more complicated my life is becoming, the diabetes esp. HELP HI Aspen! I am almost 19 and I have CF. Lately it has been really hard on me. Its been really overwhelming, and its hard to know where to turn. I was diagnosed with CF at birth so its always been my life, but as soon as I got to be about 12 and older Ive been really up and down. I think I have had about 8 PICC lines and for the past 2 years I have had diabetes that they tell me is from taking the steroid medrol. Well I guess if I can ask a question is, even though I have CF sometimes I feel like I dont know a lot about it. I know a lot on how it affects me, but not even really the details. But anyways I guess I’ve just been scared latley because it does seem like I get sick more often, and the hard part is cause I don’t get the flu, I get something they dont know. Im scared of antibiotic resistance and that I am allergic to a lot of antibiotics, so I feel like my options get worse every day. But I wanted to let you know that I enjoyed reading about how much food we can eat HAHA I eat seriously every hour I am awake. But I also think I am fat (recovering anorexic for about 6 years now) so how do you maintain a good body image and stay so poised? I try not to worry about everything, but I hate how much more complicated my life is becoming, the diabetes esp. HELP

]]> By: kathy http://saltyandsweet.org/my-story/comment-page-1/#comment-13 kathy Sat, 01 Mar 2008 23:49:42 +0000 http://saltyandsweet.wordpress.com/my-story/#comment-13 hi Aspen. im Kathy Mom to Mikey now 16 with CF, I can relate to your parents, we found out Mikey had CF when he was 6 weeks old, i knew right away something was wrong with him, i remember telling the doctor about a day after i had him that something was just not right with him, he was always cranky never happy, the doctor at the hospital said Mom you just had a baby your not yourself at the moment your baby is fine. i didnt give up. then finally i found a doctor who did listen to me and did a sweat test. ive never cried as i did that day. mikey has had 2 picc lines it started at age 13 then again at 14, since then he has been doing great.. he also has CFRD he is also doing the growth hoemone shots he only grew to a 7 yr old and for some reason was not growing anymore despite eating all the time. today he is doing great. im always on his case to do his treatments and sometimes i bother him LOL but its worth it he will understand when he is out of the teenage stage right? i had mikey read this blog just to show him that yup i was right you can do anything you want and for him to see that im not the only mom who is so over protective. but if i was not as i am with him i know he would try and skip treatments here and there.... your parents did a great job raising you, i only hope i am as strong as your mom seems to be... hi Aspen. im Kathy Mom to Mikey now 16 with CF, I can relate to your parents, we found out Mikey had CF when he was 6 weeks old, i knew right away something was wrong with him, i remember telling the doctor about a day after i had him that something was just not right with him, he was always cranky never happy, the doctor at the hospital said Mom you just had a baby your not yourself at the moment your baby is fine. i didnt give up. then finally i found a doctor who did listen to me and did a sweat test. ive never cried as i did that day. mikey has had 2 picc lines it started at age 13 then again at 14, since then he has been doing great.. he also has CFRD he is also doing the growth hoemone shots he only grew to a 7 yr old and for some reason was not growing anymore despite eating all the time. today he is doing great. im always on his case to do his treatments and sometimes i bother him LOL but its worth it he will understand when he is out of the teenage stage right?
i had mikey read this blog just to show him that yup i was right you can do anything you want and for him to see that im not the only mom who is so over protective. but if i was not as i am with him i know he would try and skip treatments here and there…. your parents did a great job raising you, i only hope i am as strong as your mom seems to be…

]]> By: Jesse Petersen http://saltyandsweet.org/my-story/comment-page-1/#comment-12 Jesse Petersen Mon, 21 Jan 2008 13:23:09 +0000 http://saltyandsweet.wordpress.com/my-story/#comment-12 Hey, Aspen. My wife pointed me to your blog over the weekend. I'm 29 with CF in Tampa (Hi, Kevin... don't think we've met, but I'm sure my wife and I would love to go bowling or something if you're game for that.) My wife started to really look into getting me fatter, despite gaining 25 pounds since we got married 15 months ago. In the process, she found you and then I found Breathe 4 Life. It's great to know that the blogosphere has a fresh breath of CFers instead of the mopey people that flooded Blogspot a few years ago. I signed off reading their blogs back then. Thanks for some new reads. I have several blogs, but none about CF (I don't think I could write too much very consistently). We'll see if that changes soon. Hey, Aspen.

My wife pointed me to your blog over the weekend. I’m 29 with CF in Tampa (Hi, Kevin… don’t think we’ve met, but I’m sure my wife and I would love to go bowling or something if you’re game for that.)

My wife started to really look into getting me fatter, despite gaining 25 pounds since we got married 15 months ago. In the process, she found you and then I found Breathe 4 Life.

It’s great to know that the blogosphere has a fresh breath of CFers instead of the mopey people that flooded Blogspot a few years ago. I signed off reading their blogs back then.

Thanks for some new reads. I have several blogs, but none about CF (I don’t think I could write too much very consistently). We’ll see if that changes soon.

]]> By: Kevin http://saltyandsweet.org/my-story/comment-page-1/#comment-11 Kevin Sun, 20 Jan 2008 09:51:17 +0000 http://saltyandsweet.wordpress.com/my-story/#comment-11 Hi Aspen! I enjoyed reading your blog. I have gone through some of the same experiences. It's so good to read that you have a good job, nice home, great friends & family, and you are HAPPY! Keep fightin the good fight Aspen! - Kevin 31yrs old w/cf, Tampa, FL Hi Aspen!
I enjoyed reading your blog. I have gone through some of the same experiences. It’s so good to read that you have a good job, nice home, great friends & family, and you are HAPPY! Keep fightin the good fight Aspen!

- Kevin 31yrs old w/cf, Tampa, FL

]]> By: Ant Donlyn http://saltyandsweet.org/my-story/comment-page-1/#comment-9 Ant Donlyn Sun, 06 Jan 2008 18:29:18 +0000 http://saltyandsweet.wordpress.com/my-story/#comment-9 My Dear Aspen, I will NEVER forget the day I learned that you have CF. I walked the Boulder Mall and cried for your parents, your grandparents, and for you. We are so lucky to have you in our lives! I am so proud of you, not for all you have accomplished (which is so very much), but for the wonderful woman and human being that you are and how you choose to fight every moment of every day! I am so sad that someone like you has to suffer the short comings of our insurance/medical system in order to stay healthy and live a complete, full life. I hope we can find the help you need. Love, your lucky "Ant" Donlyn My Dear Aspen,

I will NEVER forget the day I learned that you have CF. I walked the Boulder Mall and cried for your parents, your grandparents, and for you. We are so lucky to have you in our lives!

I am so proud of you, not for all you have accomplished (which is so very much), but for the wonderful woman and human being that you are and how you choose to fight every moment of every day! I am so sad that someone like you has to suffer the short comings of our insurance/medical system in order to stay healthy and live a complete, full life. I hope we can find the help you need.

Love, your lucky “Ant” Donlyn

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