My Story « Salty and Sweet

My Story

Please check out the new blog at saltyandsweet.org

This is my story.

Early in the morning in 1976, my mother awoke with what she thought was gas pains from the pot roast she had eaten for dinner. Haha! Nope! That was ME mom, not gas! I was ready to start my venture in this great wide world!

I was quite a colicky and fussy baby. Little did my parents know at the time I was suffering from tummy aches due to complications from Cystic Fibrosis (CF). At 18 months old I was diagnosed with CF, and the doctors told my parents I wouldn’t live past the age of twelve. I can not imagine what it would have been like to be in their shoes. CF is a life-shortening, genetic lung disease that has been a challenge to live with, but with out it I wouldn’t be the person I am today. I am very proud of who I have become.

Growing up I was a very healthy girl (for someone with CF), although I was quite protected from the world by my parents. I had to be very careful to stay away from the typical childhood illnesses, colds and such, which could lead to serious infections. My first hospitalization happened when I was in the first grade. This “tune-up” involved IV antibiotics and nebulized medications, to fight an infection in my lungs and tube feedings to help me gain weight. Although I had a HUGE appetite for a kid (even more than a normal kid, my parent’s had the grocery bills to prove it!), I struggled to stay at the 5th percentile weight wise.

With many responsibilities for my health care, I grew up quick. I knew I had to take my enzymes with every meal, otherwise my body would painfully punish me. In grade school, I remember the amazed look on the school nurses face every day when I would pop 10 pills in my mouth at once. They were scared I would choke, not realizing what a talent I had become from years of practice.

My loving parents did all they could to keep me healthy. Nebulizer treatments in the morning and evening, and sometimes in between, along with a percussion treatment on a slant board. I was quite aware I was not a “normal” child, which caused me to be quite shy. Struggling with feeling healthy and not understanding why I couldn’t be treated “normal” I became quite a handful for my parents. This struggle was a blessing in disguise. It has made me fight the people who claimed I couldn’t do certain things, those beliefs that I should be pampered because I was “special”, and has made me fight this disease with all my heart and soul.

During my teenage and young adult years, I often volunteered my time and body for research studies in hopes to find new treatments and possibly a cure for CF. I have always been very open about my disease and believe that awareness is the first step to a cure. Whole heartedly I stand behind the phrase “Knowledge is power”. The more each individual knows about their health, the more the researchers understand what CF really is, the longer and healthier we all would be. And history has proven me right!

Not knowing what my future would be, even more of an issue with a chronic illness, I struggled my hardest to build a great life for myself. I started working at a retail store at sixteen saving every penny to buy myself a car. All the while trying to prepare for college. I had no clue what I wanted to be “when I grew up”, but I knew I wanted to be successful.

In 1995 I started my post-secondary education at a local commuter college. First I wanted to be a social worker, but I was informed that high paying jobs were very difficult to find. I was well aware I needed a large income to be able to afford my high medical bills. My mother had spent hours and hours on the phone with medical companies and insurance companies, while I was growing up, so I knew what I was in store for. Finally, one day I sat down with a college course catalog and circled every class that looked interesting. A right angle turn happened in my education that day, I found out I really wanted to be a mechanical engineer when I grew up. Quite the opposite of a social worker. Also, I had a great interest in outer space and other planets so I ended up getting a minor in astrophysics along with my bachelor’s degree in mechanical engineering.

I worked as an engineer for several years, but recently I was laid off from the small company I worked for. While I job searched I took some time to soul search. I realized that although engineering was fun, I really wanted to get back to my heart’s desire to help people a little more directly in the medical field. I made a few phone calls and just so happened I found a job working with pulmonary research databases at a children’s hospital. So far this job has been a perfect fit, matching my technical skills along with my medical knowledge gained from my own experiences, with my passion to help others and further medical treatments especially for those with CF.

Independent, responsible, fairly healthy (this is a very relative comment), and a momma to a puppy. I couldn’t be happier!

My health has certainly changed over the past 25+ years. I am so grateful for everyone who has supported me through the thick and the thin, from my professional health care providers to my family and friends, and even those few strangers I have met along the way.

Please check out the new blog at saltyandsweet.org

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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

Comment by Ant Donlyn — January 6, 2008 #

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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

Comment by Kevin — January 20, 2008 #

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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.

Comment by Jesse Petersen — January 21, 2008 #

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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…

Comment by kathy — March 1, 2008 #

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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

Comment by Christine — April 26, 2008 #

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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

Comment by Jim Jando — June 11, 2008 #

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Hi Aspen,
I have enjoyed reading your blog today. I have a fifteen year old son, Nicholas, who has cf and is hypoglycemic. It is so wonderful to read real words from someone who has gone through what he is going through. He was diagnosed at 18 months as well. His story sounds alot like yours, only he has not had to deal with the insulin – just the low blood sugars. I am going to link your blog on mine and I look forward to reading more. My thoughts and prayers are with you. I look forward to getting to know you.
Robin

Comment by Robin — July 12, 2008 #

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Wow Aspen. Your strength is amazing. While I don’t have 65 Roses, I do have a set of dead beta cells. It looks to me like the CF side of CFRD is the harder part. I saw on TuDiabetes that you just got a pump. Hopefully that will get your BGs under control. Mine change my life.

Just thought I’d say hey after reading your site. You’re quite a beacon for the CFers and CFRDers out there. Keep it up.

Comment by Mike — July 22, 2008 #

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Hi, I am a year older than you with CF and just diagnosed with CFRD, although I am sure I had wacky blood sugar for five plus years as I was constantly complaining of feeling like I was hypoglycemic. I have struggled with CFRD as well. Nobody sat down and told me what it was – I did all the research. And I agree the statistics are bleak. My frustration is in the fact that although I am high quite a bit, I seem to have to convince my doctor to put me on insulin. And they want me to totally change my diet. I find the diet part too hard and frustrating. As you know somedays we are really hungry and somedays not. Plus even with enzymes I can’t digest fat, so carbs was my way of getting fuel. I am still working on figuring it all out. I enjoyed reading your story. Best of luck. I am hoping to get things under control before conceiving! (Baby #2!)

Comment by J — August 30, 2008 #

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