Featured Blogger: Josh of "Welcome to Joshland"

Josh and Moganko

Keep an eye on the CF Blogroll over the next few months! On the first and third Tuesday of every month, we will be featuring a different blogger from our blogroll. Because May is Cystic Fibrosis awareness month, we will kick of our Featured Blogger series with a new feature every Tuesday during the month of May!

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 Josh of Welcome to Joshland. Josh (and his Muppet, Moganko) is a well-known figure in the online CF community, and almost everyone I've interviewed so far lists his blog as one of their favorites! In addition to his hilarious videos about CF featuring Moganko (which are especially helpful for kids with CF!), Josh writes thoughtful, insightful posts about life with cystic fibrosis and everything it entails. Be sure to check out his blog and see for yourself!

First, tell me a little bit about yourself! (How old are you, are you married, do you have any kids, do you work, etc.)

I'm 33, I'm married to my wife Carly and we have two rambunctious little pooches. I write this blog, create videos with my puppet Moganko and volunteer for a few different organizations CF related and otherwise.

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

I was diagnosed at birth because my older sister had already been diagnosed when she was 6 months old.

What kind of effect has CF had on your life?

This disease has played a major part in shaping who I am as a person. When Angie (my sister) died, it had a profound affect on the way I looked at the world, especially since I saw the worst that this disease could dish out. CF scares me and I'm not afraid to admit it.

At the same time, I realized that I wanted to do as much as I could with my life and I knew that even though CF was going to make things more difficult, I had to try my best every single day. When I look back on my life, I want to be able to say I tried as hard as I could and did my best to succeed. Sometimes I did and sometimes I didn't, but at least I gave it my best effort.

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

I started blogging in 2009 after I wrote something on Facebook and people really enjoyed it. Then I decided to write pieces of my life story on there for my friends and family to read. It was never meant to be anything more than that. All of a sudden, people in the CF Community found my blog and started reading it. It's been a great joy in my life.

What is your favorite post you've ever written?

I don't know. I like the stories about my sister, my Angie stories, and I really like the stories that have nothing to do with CF because I don't think of it as only a CF blog, even though it definitely has strong and important posts about that. To me "Welcome to Joshland" is a story about a guy who wants to make sure he spends his life making people happy and being completely honest about his life with CF and otherwise.

Of course, doing the puppet stuff with Moganko has been pretty fun too. If you have a little one with CF, I encourage you to check out my videos made for CF kids of all ages that teach the importance of maintaining CF healthcare routines through love, honest and humor.

Moganko for CF Awareness

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

Oh man, they are all so different! From a writing perspective, I really enjoy the Unknown Cystic. He has a knack for writing funny (sometimes dark but often light), thought provoking and painfully honest posts.

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

Just hang in there.

Be peaceful.

Don't let anyone judge you for the way you live your life with CF because they aren't walking in your shoes. We all have our own journey and there is no blue print.

Be supportive of others and eliminate the negatives that surround your life as much as you possibly can. Life is too short for that.

Never forget that you have a gift to give to the world. You just have to figure out what that is and put your heart and soul into it.

Never listen to fortune cookies. They are pre-printed. ;)

Don't Forget to Return Your Questions!

Just a friendly reminder! If I've sent out interview questions for you to fill out in order to be a Featured Blogger, please try to return them as quickly as possible so that I can get all the upcoming Featured Blogger slots filled.

If you'd like to be a Featured Blogger, please let me know! (Also, if I've promised to send you out interview questions and haven't, let me know about that too.)

Thanks!

Cindy

Featured Blogger: Bloggymom of "Not Enough Oxygen"

Keep an eye on the CF Blogroll over the next few months! On the first and third Tuesday of every month, we will be featuring a different blogger from our blogroll. Because May is Cystic Fibrosis awareness month, we will kick of our Featured Blogger series with a new feature every Tuesday during the month of May!

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 "Bloggymom" from Not Enough Oxygen. (She prefers not to share her real name or pictures on the Internet.) Bloggymom is a fun, quirky CF blogger whose blog is a treasure trove of great posts about gardening, decorating, and other fun projects. She also homeschools her son, "Kiddo." Check out her blog for some great ideas!

First, tell me a little bit about yourself! (How old are you, are you married, do you have any kids, do you work, etc.)

I am married with one kid. I don't work outside the home.... I homeschool the Kiddo, keep up with the housework, quilt, embroider, knit and anything creative I can get my hands on.

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

I was 15 when I was diagnosed. I went in to an ENT and he found polyps and suspected Cystic Fibrosis. He was right. A few week later we got the results of the sweat test---CF.

What kind of effect has CF had on your life?

CF has had a pretty huge impact on my life. I have gotten pretty sick a few times for it to keep me from having a "normal" life. I try to be "normal" but it is hard. CF makes me really tired and I don't do well when I am tired. I have lots of lung bugs and it seems like I catch everything that is floating around. I am a bit dark and bit quirky because of living with a life threatening illness (maybe I was dark and quirky before my diagnosis as well). Living in a hospital for weeks at a time, having all kind of medical procedures has cause me to see life differently than I think I would if I were healthy.

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

I have been blogging off and on for about 8 years. My sister got me started. I like blogging because I don't get out of the house much due to my CF and I can at least chat with people via blogs. My current blog seems to be my best fit. It is a glimpse into the "real" me. I tried blogging like other "moms" but it didn't feel real (actually it felt fake). I don't have a fancy house or cook fancy meals like lots of blogs out there. I am creative, a quirky, I have CF and there is no use in hiding it. My husband said one days that I act the way I do and like the things I like because I just don't always have enough oxygen getting to my brain. That is what gave me the idea for the blog name.

What is your favorite post you've ever written?

Favorite post ever written... I don't think I have one of those yet. I did a post a long time ago (on an old blog that I used to write) about a day in the life of CFer at clinic. I was fun to take pictures at clinic and then post them and see people's reactions. I might have to do that at rehab some time.... or at clinic again.

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

Favorite CF Blogs..... Tricia and Nate's blog is my most favorite-- Confessions of a CF Husband. They are so honest with their experience. I also like Run Sickboy Run. I wish I could exercise like he does. I also appreciate his honesty.

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

#1 piece of advice: Take it one day at a time and pray. Prayer is the one thing that gets me through the rough days and rough weeks.

Featured Blogger: Emily of "A Breath Of Fresh Air"

Keep an eye on the CF Blogroll over the next few months! On the first and third Tuesday of every month, we will be featuring a different blogger from our blogroll. Because May is Cystic Fibrosis awareness month, we will kick off our Featured Blogger series with a new feature every Tuesday during the month of May!

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.)

Todays' Featured Blogger is Emily from A Breath Of Fresh Air. I discovered Emily's blog when she submitted it for the CF Blogroll, and I was immediately struck by the thoughtful, eloquent quality of her posts. Emily puts into words so many of the things that we cysters and fibros think, and does it beautifully! Don't forget to check out her blog and see for yourself!

First, tell me a little bit about yourself! (How old are you, are you married, do you have any kids, do you work, etc.)

Hi! My name is Emily. I'm 27 with CF and CFRD. I work in health care marketing and I'm pursuing a master's degree in bioethics at night.

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

I was diagnosed with CF at 6 weeks due to pneumonia and failure to thrive. Pretty typical.

What kind of effect has CF had on your life?

The impact of CF on my life. Hmm. That's a hard one. It's hard to tease out the specific effect of CF on my life separate from all other influential factors since I don't have another life without CF for comparison. If I had to speculate though, I'd say that CF has given me a profoundly different perspective of life and the world. I'm naturally very driven, focused and goal-oriented, but knowing the fragility of life and health has given me a heightened appreciation for the present and simple things. I think having CF has given me a really solid understanding of my own priorities and values, which have remained completely consistent throughout my life. It has made me more deliberate with my time and energy and also a little frantic to make my dreams happen, right now, since I never know what tomorrow brings. It's made me more scared, more vulnerable and certainly more cautious, but I work very hard to integrate health management and CF into an all around rich, vibrant, productive and fulfilling life.

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

I just checked and apparently I started blogging July 7, 2010, which is 2 days before my half birthday. Coincidence? I think totally.

What is your favorite post you've ever written?

My favorite thing about blogging is when I feel overcome with a strong or unsettling emotion, going to my blog and writing in a fury of emotion allows me to let go and move on. It's very powerful and it amazes me every time that we have the power to be such effective self-therapists. So, to your question, my favorite blog posts are those totally cathartic ones that free me from an otherwise distressing emotional place.

A Few of Emily's Favorites:

once upon a time: a story of childhood with CF
how can i love this body?
on hope, celebration and community
the power of time
the funny thing about unluckiness


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

It is hard to say which are my very favorites, but a few of them are: A Matter of Life and Breath, Breath Sentence , Confessions of a Cyster, Cystic Gal, Welcome to Joshland, LizisLifeline, Sassy Castle and Kelly's Transplant Adventure.

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

Don't let CF stand in the way of your dreams. CF is one part of you, but there are many other non-CF parts and life is about balancing, integrating and developing them all.

Featured Blogger: Megan of "Breathing Deeply, Laughing Loudly, and Living Fully"

Keep an eye on the CF Blogroll over the next few months! On the first and third Tuesday of every month, we will be featuring a different blogger from our blogroll. Because May is Cystic Fibrosis awareness month, we will kick of our Featured Blogger series with a new feature every Tuesday during the month of May!

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 Megan from Breathing Deeply, Laughing Loudly, And Living Fully. Megan is another dear friend whose blog has quickly become a favorite for me! She writes beautifully and candidly about cystic fibrosis, infertility, marriage, and her life. In addition to dealing with CF and CF-related infertility, Megan has been hit with a number of really difficult life events in 2012 and has handled them with inspiring grace and courage. Don't forget to pay her blog a visit!

First, tell me a little bit about yourself! 

My name is Megan, and I'm 25 years old. I married one of the nicest, sweetest men in the world on July 2, 2010, and we are currently trying to start a family by undergoing infertility treatments. I currently work part-time as a sales rep, and I hope to keep working through a pregnancy and even go back to work following a birth, but that will depend on my CF.


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

I was diagnosed at birth with CF. I ended up having a pyloric stenosis and a bowel blockage. Following two major surgeries to repair the issues, they immediately did a sweat test to see if I had CF. I firmly believe that this early diagnosis is a big part of why I'm doing so well today.


What kind of effect has CF had on your life?

This is a big question, and I'm not sure I even fully understand the entire effect CF has had on my life. I will say that I tend to look at everyday is a blessing. I try to enjoy the day at hand, and I don't hold grudges. I also try to look at everything positively because I can't waste my time with negative feelings. CF definitely has led to me thinking about my mortality much sooner than I'd like, but that also has led to me living as full of a life as possible. Sadly, there's not a day that goes by where the progression of my CF is not on my mind. I just try to keep myself as healthy as possible for as long as possible!

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

I began blogging at the end of August 2011. In July, my husband and I had decided to start trying to conceive. After this decision, I immediately sought out other cysters/fibros who had successful pregnancies. I began reading blog after blog from fellow cysters and fibros, and I decided I wanted to blog my journey as well. After beginning to blog, I also found out that I had infertility which made me even happier that I had started blogging. My hope, when starting my blog, was (and still is) that it would help at least one person in their journey (whether it be their journey with CF or with infertility).

What is your favorite post you've ever written?

There are a few posts that I'm really proud of because I feel they deal with important topics and are also well-written. My favorite post is probably my Advice for the Younger CF Generation. The post deals with things I learned the hard way while growing up with this disease.

What are a few of YOUR favorite CF blogs?

I have a LOT of my favorite CF blogs. I would have to say that the following are ones that I make sure to read as often as possible:

-Being Cindy Baldwin
-Inhaling Hope
-How I Live, Laugh, and Love with CF
-Run Sick Boy Run
-CF Fat Boy

What would be your #1 piece of advice to others with CF?
This question really goes hand-in-hand with my favorite post. I think my ULTIMATE piece of advice to other cysters and fibros is to remember that compliance is KEY. Spending the time to do all the treatments, take all the right medicine, eat the right foods, and do the right amount of exercise can be draining, but it's worth it to keep up your health for as long as possible!

If You Don't See Your Blog Listed

So, it has come to my attention in the last few days that there are at least two blogs that didn't make it on the blogroll a few weeks ago when I was initially adding a lot of links. If you asked to be put on the blogroll and don't see your name, please let me know! I got a LOT of links in those first few days, and while I was pretty sure I had added them all, I guess I didn't! If you've given me your link for the CF Blogroll, please check the list really quick to make sure that you're on there. If not, leave me a comment or send an e-mail to beingcindybaldwin AT gmail DOT com and I'll happily fix my mistake.

Also, I'm still taking volunteers for the Featured Blogger posts, and will be for several months! If you'd like to be a Featured Blogger, just let me know and I will be happy to set that up with you. For those who have received the questions and/or given me answers, please note that I'm putting them up in the order that I receive the answers and a picture, so it will most likely take a few weeks for your post to go up.

Featured Blogger: Jenny of "My Life As A Livingston"

Jenny and her daughter, Morgan

Keep an eye on the CF Blogroll over the next few months! On the first and third Tuesday of every month, we will be featuring a different blogger from our blogroll. Because May is Cystic Fibrosis awareness month, we will kick off our Featured Blogger series with a new feature every Tuesday during the month of May!

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 Jenny from My Life as a Livingston. I first "met" Jenny through her older sister, Teresa, who asked me to check up on Jenny during her first hospitalization after her daughter Morgan was born. For various reasons, we didn't manage to connect during that hospitalization, but—like many others—I've enjoyed reading Jenny's blog ever since, and I consider her one of my dear friends! Jenny's blog is equal parts side-splitting humor and thoughtful, well-written posts on a host of topics. Be sure to check it out!

First, tell me a little bit about yourself!

A little bit about me... well for starters, my name is Jenny and I'm a 24 year old wife and mom who happens to have CF. After graduating from Harvard with a degree in nuclear physics, I spent two years exploring the world - backpacking through Europe, feeding the starving children of Ethiopia... that kind of thing. Okay, okay, so that may not be entirely true. But it'd be pretty cool, right?

The truth is I'm just a small town girl who met the love of her life right out of high school, married him a couple years later and has been living the dream ever since. The great guy I married is named Adam and together we have two adorable little girls (I know everyone says their kids are cute, but minereally are). My stepdaughter Shylee is six years old, a bright and funny little princess and 100% girl. Morgan, forever my baby, turns 3 this summer; she is adventurous and hilarious, sweet and oh-so-sassy, very much her father's daughter. We live in chaos about 98% of the time, but we certainly know how to have fun.

Adam is a coal miner which means long, bizarre hours and a lot of hard work, but he actually enjoys the work he does. I work at a local credit union and I absolutely love my job. I worked full-time for years, but I was able to cut back to part-time last year which has worked out really well for our family. I now have more time to spend at home with Morgan (which is wonderful) and I'm more dedicated than ever to taking care of my health.

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

I was tested and diagnosed at birth after having two sisters born with with CF. In a family of five kids, three of us have CF. My oldest sister, Shannan, passed away when she was just 14.

What kind of effect has CF had on your life?

For a lot of years CF played a very small role in my day to day life. I was realtively healthy and required little treatment. However, in the back of my mind there was always this voice in my head reminding me that I have the same disease that killed my sister. It was a strange thing, feeling so good yet knowing first-hand how serious this disease can be. Part of me believed I'd always the the exception, while part of me was living in fear just waiting for my health to take a turn for the worst.

Having Morgan was without a doubt the most wonderful and defining experience of my entire life. It's also the experience that introduced me the scary, difficult and sometimes heartbreaking reality of CF. I got VERY sick shortly after giving birth and I remember lying in an IMCU bed, unable to walk on my own, struggling to breathe, honestly wondering if I'd wake up the next morning. That was "my moment". I began some serious soul searching and in the (almost) 3 years since then, I've learned so much about what having CF really means for me.

So... what kind of effect has CF had on my life? Well, that's a hard question to answer because aside from the difficulties and physical hardships that go hand-in-hand with CF, there's this whole other part of this experience that is weirdly and wonderfully beautiful. CF has made me a stronger person. CF has given me the gift of going through life with my eyes and heart wide open, appreciating things on an entirely different level than a lot of people. CF has taught me how to be positive even when things get tough. CF has made me more compassionate towards others. CF has made it possible for me to meet some of the most outstanding people I've ever known. Simply put, CF has helped shape me into the person I am today. I think that some of those good things are fundamental parts of my personality and would exist inside of me with or without CF, but somehow during this whole process those things have been magnified and are now a major part of who I am. I'm grateful for and even a little bit proud of that.

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

Writing is something that I've always loved, but after high school I stopped doing it for quite a while. I began "blogging" shortly before I became pregnant, but I didn't share my work with anyone. For the most part my writing at that time was an outlet for me while I was working through some difficult things in my life. I soon remembered how much I enjoyed writing and I continued to write frequently throughout the course my pregnancy. It wasn't until a few friends read what I had written and encouraged me to share my work that I started publicly writing on my current blog.

That happened to be around the same time that CF was becoming a frequent and pesky visitor in my life. During that especially scary hospitalization that I mentioned before, the amazingly sweet recreational therapist told me how several of the other CF patients liked to connect through their blogs. When I went online to check out these "CF bloggers" I found literally hundreds of people with stories similar to mine. I had recently been launched into this frightening new CF world, and I was fortunate enough to land in the wide open arms of the online CF community. I've been blogging ever since.

What is your favorite post you've ever written?

I really can't pick just one. I've had so much fun writing my posts and there are many that are very important to me, but these are a few that come to mind right away when I think of my personal favorites:
Body After Baby
Catnap
I Came Here To Live
On Expectations And Being "Normal"

What are a few of YOUR favorite CF blogs?

I adore Welcome to Joshland. The writing is informative, fun, well thought-out and honest (and the author happens to be someone I'm incredibly proud to call my friend).

The Unknown Cystic is another favorite. I really dig UC's sarcastic (and sometimes crude) sense of humor and realistic approach to life and all things CF-related.

I have CF, So What? is a great place to go for a hearty dose of positivity and inspiration.

being cindy {baldwin} is where I go when I want to think. Cindy is a great writer whose posts are incredibly heartfelt and thought-provoking.

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

My biggest piece of advice would be this: Don't let anyone tell you that what you are feeling is wrong. CF is different for all of us; our stories are similar in ways, yet very much our own. Even though we belong to this incredible online community, we are all human and unfortunately, as such, we tend to pass judgment on each other. Time and time again I've witnessed people being attacked because they're not living up to the expectations of others in one way or another (they're not being realistic enough / positive enough / optimistic enough / whatever). The thing is, we each cope and deal with things differently. There is no right way to feel about this journey and to assume that everyone should handle things the way we choose to is just ridiculous. So be kind to each other and remember that your feelings, your thoughts and your emotions are just that - YOURS. Don't let anyone try to make you feel bad about that.