We're still here!

Friends of the CF blogroll,

I've had a few people ask me if I'm still adding blogs to the blogroll, and the answer is YES! My life is pretty crazy right now and so it takes me a few weeks to get new blogs added once I receive an e-mail or comment, but I do get them all up within about a month provided new applicants have added the button (see the "How to get your blog listed" section for directions). If you've asked to be added to the blogroll and more than four weeks have passed in which you haven't received confirmation from me that I've added you, please feel free to e-mail me again. Every now and then an e-mail gets swallowed up in my inbox, or doesn't go through.

I'm also always happy to feature any blogger from the blogroll who is interested. Send me an email or leave a comment here and I'll forward a copy of the interview questions!

Hope to see YOUR blog here soon!

Cindy Baldwin

Anything Is Possible: A CF Patient Interviews Her Parents About Life, Family, and Raising A Child With CF

I was recently contacted by Erin Evans, a 31-year-old CF patient who works for the Cystic Fibrosis Lifestyle Foundation. Erin sent me a blog post that she'd written for the CFLF blog, in which she shared an interview she'd done with her parents about what it was like to raise a child with cystic fibrosis. I thought it was such a neat interview and something that would resonate with both CF patients and parents of CF kids. Erin has graciously allowed me to share part of the interview here today—a link for the full interview is at the bottom.

Last week I drove out to my parent’s house, the house that I grew up in, and sat down with them, at the table where we'd had hundreds and hundreds of dinners and conversations as a family, and interviewed them about what it was like to have a child with CF. Even though I had always felt like my family was very open, and not afraid to talk about anything, it was really the first time we'd had a conversation about my CF, as adults. 

I expected to learn things I hadn’t known before, all the things that my bad memory had lost along the way, but what followed was an almost two hour conversation about what it was like in those early years when so much was still unknown. After spending hours listening to the interview over and over again, transcribing it, picking it apart, and cutting it down to a reasonable size, I felt like I finally had the missing pieces to the story I'd been telling myself for years. 

See full interview here!

Organizing the CF Blogroll

CF Bloggers,

I never could have imagined when I began this blogroll just how much it would take off! We now have about a hundred bloggers who have been added to the CF Blogroll, with more requesting to join on a regular basis. I don't know about you, but I love the opportunity to have so many CF blogs in one place!

Because we are getting so big, I'm going to be changing the way things are organized here at the CF Blogroll. Up until now the blogs have been split into two groups—blogs written by people with CF, and blogs written by parents or spouses of people with CF. From now on, however, the blogroll will be organized into the following categories:

Life With Cystic Fibrosis
This category will be for personal blogs that are focused primarily on CF and what effects CF has on a person's life.

A Day In The Life
This category will be for blogs that are written by CFers or their caregivers but don't deal primarily with the subject of CF—these are blogs that might mention CF, but give equal or more time to daily life, crafts, jobs/school, etc.

Parents and Spouses
This category will continue to house blogs written by parents and spouses of CFers.

Transplant Talk
This category will be for blogs dealing with CF-related transplants, whether written by a CFer awaiting transplant or a transplant recipient.

Over the next week or two, I will be organizing all of the existing blogs on the blogroll into these categories. I'll be assigning blogs to categories based on a quick perusal of the blog's design and the topics addressed in recent posts; if you would like your blog to be assigned to a specific category (or re-assigned to a new category if you don't like the one I've put you in!), please let me know. In the future, new bloggers will need to specify a category for their blog to be added to the blogroll.

Breathe easy!
Cindy Baldwin
www.beingcindy.com

Featured Blogger: Kristy Of "Life in a Bubble of Fun"

Today's Featured Blogger is Kristy from Life in a Bubble of Fun. Kristy's 2-year-old son has cystic fibrosis and she blogs about the ups and downs of their life together. Kristy and Cadel have certainly had some rough challenges come their way, and her blog shows a realistic picture of some of the toughest things about parenting a CF child, but her courage and determination to create a happy life for her children is inspiring!

First, tell me a little bit about yourself and your child with CF!

My name is Kristy, I am a stay-at-home-Mum married with three children aged 6, 5 and 2.
Our youngest child has CF. Cadel is a bubbly little guy that doesn't let anything hold him back. He is definitely an old soul who has so much to teach me and our family. Cadel's journey with CF has bought out new discoveries in myself that I never knew hid deep down inside. I have discovered I love to write, hence the blogging and I would now like to study to become a nurse, specialising in paediatric ICU nursing.

How old was your child when they were diagnosed with CF? What led to their diagnosis?

Right from the birth of Cadel my mother's intuition was telling me that something wasn't quite right. When born Cadel had meconiuim aspiration and spent 13 days in the Special Care Nursery, 12 of those on oxygen. He developed a nasty cough and was referred down to the Respiratory specialists at the closest major Children's Hospital. While at home Cadel was losing weight and looked pale and just generally unwell. 

The specialists at the Children's hospital sent him for a sweat test, this was done on Friday and on the following Tuesday we got a call saying they would like to see us at the hospital and to bring an overnight bag.

So off we went to sit in an office to be told the devastating news that our tiny baby had Cystic Fibrosis and was unwell and needed to be admitted straight away and put on IV antibiotics. A crazy whirlwind of education and processing started. Cadel spent his first Christmas in hospital and has since had 23 admissions ranging anywhere from 1 night to up to 52 days at a time. He has been unusually unwell for his age, with numerous chest infections and the diagnosis is not looking good. Cadel has CF related liver disease as well, he spent over a 1/3 of 2012 in hospital on IV antibiotics fighting chest infections and we were given the devastating news in September 2012 that he is most likely not to make it to the age of 10.

What kind of effect has CF had on your life and your family's lives?

CF has had a major impact on our lives as our son has been so unwell for his age. So we have lost a lot of time and events with the other children as Cadel has been admitted a lot. But in saying that my husband and I upon learning our son's diagnosis took on the quote from an adult CF sufferer that went along the lines of " I don't live with CF. CF lives with me." We try and not let it rule our lives and fit it into our lives. It has it days when we feel isolated and miss out on doing certain things because of CF but we have met some amazing people in the CF community who are now great friends and we have CF to thank for that.

When did you start blogging? What led you to start blogging?

I started blogging around April 2013. It all started as we were part of a Facebook group that were doing some CF awareness so for the month of march we did the A to Z of Cystic Fibrosis. It was great to tell our family and friends on Facebook about what each letter meant in reference to CF in our lives. I really enjoyed it and people encouraged me to start blogging as they thought I had a way with words. It was easier to write for me then it is to talk to people so it was a way to spread awareness for CF and tell our story.

What is your favorite post you've ever written?

My favourite post would have to be Don't call me super mum. I really enjoyed writing it and it came straight from my heart and opened up my world for all to read and judge as I was telling people about how I really felt and what I had wanted to say for a really long time.

What are a few of YOUR favorite CF blogs? (They don't have to be on the blogroll.)
I love organising blogs! I would love to have a more organised house and life and try to do many small things to make this the case so some of my favourite blogs would have to be

mypigeonpair.com
theorganisedhousewife.com.au
iheartorganizing.blogspot.com.au

What would be your #1 piece of advice to other parents with CF children?

Have a good support base and connect with other parents online and in anyway you can. It helps to talk to others who share your pain, triumphs and worries.

Featured Blogger: Melissa of "My Lung Transplant Journey"

Any member of the CF Blogroll is eligible to be a Featured Blogger! If you'd like to be have a little time in the spotlight and help bring more traffic to your blog, leave a comment or e-mail beingcindybaldwin AT gmail DOT com, and we'd love to feature you! Don't forget to include your e-mail address so that I can send you a list of interview questions. (Currently, I am posting the interviews in the order that I receive them, so don't be worried if it takes a few weeks for your interview to go up.)

Today's Featured Blogger is Melissa of "My Lung Transplant Journey." Melissa has spent eight months waiting for new lungs, and uses her blog as a way to record her thoughts about her transplant adventure and keep friends and family updated with any news. It doesn't take much browsing on her blog to see that Melissa is a courageous and inspiring example of a CFer who is absolutely making the best of difficult circumstances! Don't forget to pay her blog a visit.

First, tell me a little bit about yourself! 

My name is Melissa and I am from Red Deer, Alberta. I am single and 21 years old. I used to work part time at a grocery store up until about a year and a half ago when I got to sick to work. I have completed my third year in the Bachelor of Education program at the University of Alberta and am hoping to go back and finish my final year after my lung transplant. I have one sister, who does not have CF, and many step siblings.

How old were you when you were diagnosed with CF? What led to your diagnosis?

I was diagnosed when I was 3 weeks old. After I was born I was failure to thrive and after arguing with the doctors and going through a few tests I was finally diagnosed.

What kind of effect has CF had on your life?

Throughout my childhood and teenage years my CF was under control. I had CF, but it did not have CF. I had a similar childhood to many others. I went to school, played with friends, and had a great time. Throughout my teenage years I played basketball, baseball, curled, and participated in as many sports as I could. The only difference was that I did treatments twice a day and took numerous enzymes and other pills. The first hospitalization I had due to my CF was when I was 14. I went in for what they called a tune-up and every year after that I would go in for two weeks for this tune-up. Things took a turn when I found out I had got a bacteria that is called mycobacterium abcessuss when I was 18. This is a really bad bug and I started being treated with numerous IV medications for 3 months at a time. Things continued to worsen and despite all my and the doctors efforts, my lung function dropped drastically. Currently I am at 25% and am awaiting a double lung transplant. I found out in January of 2012 that I would need a transplant and things progressed quite quickly. I have been on the list for 8 months now and it is not getting any easier.

When did you start blogging? What led you to start blogging?

I started blogging after I found out I needed a transplant, and the idea of transplant led me to start blogging. I look at it as sort of a diary that I will be able to look back on years from now to realize all that I had to go through and how thankful I was for my donor (when one is found). My blog follows me leading up to my transplant, and will continue to follow me during and after my transplant. As many may know, transplant is not a cure, but a treatment. It does not come without complications, but in the end the positives outweigh the negatives.

What is your favorite post you've ever written?

I wouldn't say that I have a favorite post because they all equally mean something to me. I am really proud of the pre-transplant video I created though. I'm hoping to make a post-transplant video too.

What are a few of YOUR favorite CF blogs?

My favorite blog is live, laugh, lungs - This young girl has undergone a lung transplant and it has been inspirational reading about her story. She brings humor into every post and it is a great read.

Another one of my favorite blogs is Breath to Blog - This blog helps me understand that we cannot take one single breath for granted. It is a sad, sad story.

What would be your #1 piece of advice to others with CF?

My number 1 piece of advice to other CFers is to not take one single breath for granted. You never know what will happen. Live your life to the fullest and make all your dreams come true. Do your treatments and keep yourself as healthy as you can! And lastly, you HAVE CF, CF DOES NOT HAVE you!!

Featured Blogger: Kayla of "One Breath at a Time"

If you'd like to be a Featured Blogger, leave a comment or e-mail beingcindybaldwin AT gmail DOT com, and we'd love to feature you! Don't forget to include your e-mail address so that I can send you a list of interview questions. (Currently, I am posting the interviews in the order that I receive them, so don't be worried if it takes a few weeks for your interview to go up.)

Today's Featured Blogger is Kayla of "One Breath At A Time." I "met" Kayla through the CF Blogroll and am excited to be able to feature her today! Kayla began her blog as a way to help keep herself accountable for her health, and she is a great example of determination and courage. Don't forget to pay her blog a visit!

First, tell me a little bit about yourself!

Hi! I'm Kayla, and I'm 25 years old. I'm married to my best friend, Eldon. We don't have any children yet, but we do have dreams of having at lest one in the future. I am currently a 4th grade teacher, and I love my job! I'm working at my dream school in my ideal grade level!

How old were you when you were diagnosed with CF? What led to your diagnosis?

I was 6 years old when I was finally diagnosed with cystic fibrosis. As a kid, I was extremely active which kept me from having a lot of the symptoms that normally exist in your lungs. I was constantly having issues with my digestion though. We went through 3 pediatricians who just told my mom that I was sickly, and she was worried about nothing. She was just being an overprotective mother. The last pediatrician got an idea, and tested me for CF. Sure enough, I had it, and we began seeing a CF specialist right away.

What kind of effect has CF had on your life?

I like to say that I don't let cystic fibrosis run my life, but it really does affect in in many different ways. For me, the biggest struggle has always been staying compliant with my treatments. They are a time commitment that I have not always been willing to make. When I was younger, my friends would all be outside playing, and I would have to come in to do my treatments. In high school, I had to work my treatments in around my busy schedule. When I got to college, I did my rebelling. No, I didn't go out partying or drinking or smoking. I just stopped doing my treatments and continued being non-compliant throughout my college career. It wasn't until I was threatened with the possibility of a lung transplant at age 22, that I decided to turn things around.

Other than the treatments, I do not let CF stop me from doing what I want to do. I cheered and tumbled, was a Young Life leader, and became a teacher. I set goals for myself, and I work hard to meet them. I have signed up for two 5K's this year so far, and I have started training for them. I have set goals for my PFT's as well. Not to mention, I plan on have a child at some point in the future. I live my life the way I want to live it.... with the added treatments, doctor's appointments, and everything else that come with CF.

When did you start blogging? What led you to start blogging?

I started my blog in 2011. In the fall of 2010, my lung function had dropped to 34%, and my doctor told me that it was time to start thinking about a lung transplant. I was not ready for that, so I worked hard to stay compliant with my treatments and workouts until I went to Vanderbilt for tests to decide whether I was a candidate. My lung function was up to 57%. That following January, I decided to start the blog to hold myself accountable. It was a way to share my experiences with CF without having to talk about it all the time. It then kind of morphed into a way to raise awareness and a way to fund raise as well.

What is your favorite post you've ever written?

Man of my Dreams is probably my favorite, because it is all about my best friend and how blessed I am to have found him. Those of us who have cystic fibrosis know that it's a lot to deal with, so when you find someone who is so willing to take that on with you, it's an wonderful thing!

What are a few of YOUR favorite CF blogs? (They don't have to be on the blogroll.)

I follow so many CF blogs now that it's hard to choose my favorites. I guess my favorites boil down to which blogs I read the most. I highly recommend these blogs. They are all upbeat and educational! :)

Run, Sickboy, Run
Live, Laugh, Love, Breathe
I have CF, but it will never have me

What would be your #1 piece of advice to others with CF?

Don't let cystic fibrosis run your life. Yes, it is obviously a big part of your life, and it is going to control certain aspects of your life. But don't let it be a deciding factor for the things you want to do. Don't let it take away your dreams. My doctors were not all that happy about be being a teacher (germs everywhere), but I did it anyways because I knew that I was made to be a teacher. I cheered in middle and high schools, and I never used CF as an excuse for why I was struggling with our workouts. Live you life the way you want to live it, not the way CF wants you to live it.

Featured Blogger: Cheriz of "Life of Cheriz"

If you'd like to be a Featured Blogger, leave a comment or e-mail beingcindybaldwin AT gmail DOT com, and we'd love to feature you! Don't forget to include your e-mail address so that I can send you a list of interview questions. (Currently, I am posting the interviews in the order that I receive them, so don't be worried if it takes a few weeks for your interview to go up.)

Today's Featured Blogger is Cheriz of "Life of Cheriz." I "met" Cheriz through the CF Blogroll and am excited to be able to feature her today! It's easy to see from her blog that she is full of love for life and is a great example of living and thriving with CF. Don't forget to pay her blog a visit!

First, tell me a little bit about yourself! 

Hi, I’m Cheriz. I’m pursuing my Master’s Degree in Social Work. I love Dance, Theatre, The Environment/ Geology, Mini-Golf, Architecture, Real Estate, and Pickles!

How old were you when you were diagnosed with CF? What led to your diagnosis?

I was 10 weeks premature and born with an intestinal blockage, I was life-flighted and had surgery right after birth. Nobody else in my family has CF, so at first they thought I had a liver disease, because my liver was not working properly. I was diagnosed within a couple weeks and came home from the hospital at 6 months old.

What kind of effect has CF had on your life?

 Its been a roller coaster of experience, when I was a couple years old I was also diagnosed with a seizure disorder and cerebral palsy as well. Ever since I was little I would spend a couple weeks multiple times a year in the hospital. But to be honest, I enjoyed the hospital, the nurses made it fun, and one parent was always with me. I could say I wish I was never born with CF, but I’d be lying. It is a huge part of who I am. I have learned dedication, empathy, and independence from having CF. It has very much shaped who I have become today. And I hope to take all my personal experience and channel it towards becoming a healthcare social worker who understands where the patient is coming from, in order to best help the patients I work with in the future.

When did you start blogging? What led you to start blogging? 

I started blogging in February 2012. I had talked about CF awareness issues with a few other people and started to do some Stand-Up comedy in college. A few friends recommended I give blogging a try and I really enjoyed it!

What is your favorite post you've ever written?

Either “It Isn’t All Tears and Sadness, Get a Full Picture” which talks about why I’m thankful for my CF, or my videos! I made a video for my friend Laura (w/CF) to cheer her up and I made a 2nd video blog discussing life in the hospital when I was younger.

What are a few of YOUR favorite CF blogs?

Live*Laugh*Love*Breathe

Run, Sickboy, Run 

CF Fatboy


What would be your #1 piece of advice to others with CF?

I would say be organized, multi-task, and stay focused on the things you love! For example, I keep everything written down on a calendar, I always do my make-up and hair while doing my nebs in the morning, and I remind myself I need to do everything to stay healthy for the activities, and people I love. Oh, and don’t be afraid to ask family and friends for help. I struggle with that, but they always remind me that they are there for me!