Saturday, October 12, 2013

My "Get Healthy" Checklist

Guest blog by Ashley Coleman

If you asked me who I am and what I am about, you probably wouldn’t ever hear me being defined by my Cystic Fibrosis. First and foremost, I am a devoted follower of Christ. My passion is to help people find truth. The truth sets us free. Where does freedom come from? Jesus Christ. I’m defined by few things outside of Him, but Ronnie has asked me to write about my Cystic Fibrosis journey, and so I will.

Stay with me as I make this long, long journey into a few paragraphs. At the end of February 2012, I noticed I was getting sick. I had just finished a long day at work and had a really lame workout because I was so fatigued. I bought some groceries because I knew I would need a few days of rest. Little did I know, I wouldn’t be able to carry those groceries in my house. I was so out of breath, I had to call my mom to come unload my groceries. This was a Sunday. She convinced me if I was still unable to make it up the stairs without getting out of breathe that we would visit our local ER (not my CF Clinic that is 90 minutes away). Needless to say, I didn’t improve and I found myself staying in the local hospital for a night without them knowing what to do with me. I was sent home with some oral antibiotics and not even given a PFT.

A few days later, I found myself walking the halls of my CF Clinic, Tulane, to my doctor’s office unable to even carry my purse. Once again, Mom to the rescue and after much convincing my doctor admitted me. I stayed 3 nights and was released just in time for my 25th birthday. 20 pounds lighter, lung function at 57%, first PICC line, first CF hospitalization, first real CF exacerbation; I was scared.

57% was a number I had never seen. Not me, I am healthy. Not me, I don’t really have CF. It was time to wake up and get out of this cozy place of denial and take control of my health and well being. For two weeks, I did every single IV and breathing treatment and even walked some. There was no getting past this; it was now or never. Wake up and deal with my CF or just lay here and die, literally. It was life or death for me. I did improve to 78% but that wasn’t good enough for me.

I was born a fighter. Not literally, but figuratively. I was not going down like this.

As soon as I got my PICC line out, I was cleared for vigorous exercise again and could get super sweaty. I grabbed my Insanity DVDs and sometimes did two workouts a day, walked my dog, did every single treatment, and went to the gym. I packed on some weight, a little more fat than I wanted, but over the past 18 months my body composition has changed. I have packed on solid muscle and improved my lung function to 95%. I went from 86% to 95% in just three months. At 86% my doctor’s words were “don’t expect too much improvement from here” so just imagine his reaction when he saw 95%!

My biggest and only change is exercise. I workout 30-120 minutes per day, 6 days a week. Every day I go to the gym to workout a different muscle group. I would recommend beginners to start with a 3 day a week full-body routine, but I have been weight lifting for about 3 years now. I also do some sort of cardio. Lately, it’s been Insanity videos, swimming, and running. Now that it’s getting cooler out, I am going to be cycling more. I also walk my dog 1-2 miles a day and I look forward to that increasing as well. My diet consists of anti-inflammatory foods 5-7 days a week.

So what do I suggest to improve your lung function and quality of life?

  •      Add things before you start taking away. Add the anti-inflammatory foods before taking your daily Doritos away. Eventually, you will begin to relate how you feel to what you are putting in your body. FOOD is FUEL. Add a little exercise at a time. You don’t want to overwhelm and burn yourself out.
  •       Do what you can with where you are and what you have. What does this mean? If you can walk to the mailbox and back 5 times do it, then do it again the next day and do it 6 times. If you can run a mile, do it. If you cannot afford a gym membership, do your best to fit that in your budget. Join a class at the gym. The YMCA turns no one away for being unable to pay.
  •       Don’t do this alone. Get friends involved. Ask for accountability, whether that be friends in person or friends on CF forums. Make a commitment and do it. If you can afford it, hire a personal trainer 2-4 times a week. I am beginning online training if you are interested, but I’m not here to plug myself. A financial investment is sometimes all you need for lasting motivation.
  •       Mentally prepare yourself. Tell yourself every single day that you can and you are doing this.  Tell yourself what a good job you are doing and truly believe it.
  •       Hebrews 12:11 says, “No discipline seems pleasant at the time, but in the end produces a harvest of righteousness”. I posted this scripture everywhere in my house.
  •       Be kind to yourself. You will not change over night. You aren’t where you want to be, but you are on your way. Remind yourself every day of this. Love yourself well enough to take care of yourself.
  •        Find a balance. Be diligent with your treatments, but also don’t beat yourself up if you miss one. It’s okay. Find that healthy balance.
Please, let me know what I can do to help. My goal is to see us as a CF community (and human race as a whole), take charge of our individual health – mind, body, and spirit. We can do this. You can do this! Believe me. Believe in you.

Bio: Ashley is 26 years old and lives in Mississippi. Ashley is trying to make a difference in this world, starting with her community while seeking health in all areas of life, freedom, and happiness for herself and others. She hopes to encourage and inspire transformation, not only those with CF, but every person she comes in contact with to be healthy and strong, but most importantly tap into God's perfect plan for their life and walk in God’s promises for all of us. She is a personal trainer and aspiring writer and blogger. She is passionate about life, loving people well, laughing, running, reading, and learning. Ashley believes every day is a journey, an adventure, a learning experience, and another opportunity to live a day full of love and life. Join her on this journey by visiting her blog: She would also love to hear from you. Her email is

Thursday, October 10, 2013

Thankful Thursday: Freedom & Access

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for bread machines. After paying $6 for a loaf of bread that didn't have chemicals and additives, I decided I should just make my own. So I've been making my own lately, and holy moly, it's awesome. Not only do I get to eat awesome bread, but a couple times a week I know what it's like to feel like an elderly woman in the 1920s (because those are the only people that made bread, right?)
I'm thankful for a sick toddler. Ok, I'm not thankful that Mckenna is sick, but I am thankful for the remind to appreciate good health.

I'm thankful for freedom. With the exception of one month, I've been on an IVF medication protocol for almost a year. As bummed out as I am that our last cycle didn't work, it does feel glorious to be done with shots, pills, and lozenges for awhile. I'm especially thrilled to be done with my progesterone shots because according to my nurse I have an insane amount of scar tissue from all the rounds that "must make these shots really painful".

I'm thankful for tea parties. Mckenna loves having tea parties lately and it melts my heart to watch her as she pours us both tea (water) and says, "cheers". It's also great for a laugh to watch her try to put a pinky out while she laughs!

Ronnie's List:

I'm thankful for access. I'm not talking about access to healthcare or internet access, I'm just talking about access to stores. It's amazing that we have the ability to get into our car, drive a mile or two, and be surrounded by stores that have the things that we need...and maybe more accurately, want. I needed a new file case this morning when my old one broke; A 5 minute drive later and I had one in hand. Amazing!

I'm thankful for the health to battle through sickness. I had clinic on Monday and of course did PFTs. I wasn't sure how they'd be since I had been battling back whatever Mckenna had for a good five days. I definitely wasn't sick like her, but I did have earaches, increased cough, increased sputum, etc. In June of this year I blew a 75%. On Monday, it was a 73%. I'll take it!!

I'm thankful for collaboration. One of the knocks I hear about people/organizations in the CF community is that there isn't enough collaboration. While this is true for some people and some organizations, this is certainly not true for me or CysticLife. I've been working for quite a while on something with some folks in the community that we're going to launch real soon, and I can't tell you how excited we are to see the response.

What about you? What are you thankful for today?

Wednesday, October 9, 2013

Question from Reader: When Cystic Fibrosis Impacts Our Relationships

As you guys know, I love answering questions on topics I have experience in. I've been blessed to have had many great relationships in my life, and now, I'm able to call the most awesomest girl on the planet MY WIFE (still can't believe it)! We all know that cystic fibrosis can impact our relationships - both positively and negatively. This particular question comes from a fellow fibro who was recently heart broken when his girlfriend of 6 months decided that CF, and the possible implications and impacts of the disease, was more than she could handle.

Hello Ronnie,

I have cystic fibrosis as well. You have been a huge inspiration to me both physically regarding CF and spiritually. I apologize for not introducing myself sooner.

However, the reason I am messaging you is because I have a broken heart. My girlfriend of 6 months told me this evening that she could not see herself marrying me because if we had children (through assisted fertilization) I might die before they get a chance to grow up. We have had that discussion  before and she was devastated but I thought she had come to accept it. For the last month or so she has been saying that we need to break up and she would never give me a reason and her actions contradicted her words of "we need to break up" because everything she does indicates she still wants to be with me. Tonight she finally broke down and told me its because she doesn't want kids to grow up without a dad and also the fact that intro vitro fertilization (sorry if I misspelled anything, my knowledge on the matter is limited) is so expensive.

Is it wrong of me to expect her to be okay with the unsure future? I'm devastated.

I have come to you seeking advice because I know you have been through this, you have a beautiful daughter, and your life example (through my perspective on Facebook) leads me to believe that  you have the experience to help me.

Sorry to hear about this [name withheld]. I can only share with you my own experience and hopefully it can help a bit.

Very early on in our dating life, Mandi caught me off guard by saying, "I wouldn't marry you unless I was totally comfortable with being a young widow."

I was shocked that she would even think about this, but, that's because I don't have an "outsiders" perspective, and frankly, I'm a man. We men generally don't think for the future, we think for the present. Women on the other hand are wired a completely different way.

It takes a very special woman to commit their lives to a man with CF. Our life is simply different. There are sacrifices we have to make as a couple that no other couple has to worry about. And, there is the prospective of an untimely death that would leave them all by themselves for an undetermined amount of time.

So, to answer your question - Yes, it is wrong of you to expect her to be comfortable with being a young widow and/or a single mother. Most girls won't be comfortable with that. Is it a reality that it could happen? Sure. Are we planning on it? Absolutely not!!
Her worry about IVF being expensive is just noise and her grasping at straws. You can figure out the money part.

I'd be thankful that this is only coming down at 6 months into the relationship. I understand that the pain is real, the hurt is real and you're not feeling great, but it could have been much worse. Imagine if you were engaged when she realized this?
Sometimes, God places something on the heart of the girl who is wrong for us. The wrong girl needs to be out of the picture before the right girl can enter it.
One week before I met my future wife, my girlfriend and I of over 2 years broke-up. I wasn't happy about it at the time. But, looking back, I thank the Lord that He ended that relationship when He did.

Hope this helps and please let me know if you have any questions or comments.

Monday, October 7, 2013

We're Not Pregnant

...Well now that that's out on the table, I should explain...

We said we would give IVF updates when it felt right, and well, now seems like a good time. Since our break early in the summer, we got back on the wagon. We did a frozen cycle. A similar protocol to another we had done with an added medication. Thankfully, this time we actually made it to transfer, which we are really thankful for (what a blessing to have found a protocol that works for us). We transferred two perfect-looking, little loves on Friday, September 27th.

Unfortunately we learned today that it didn’t work and we are not pregnant.

It is tough news to hear. There have been a lot of tears. It is hard to devout your life to trying to have another baby for nearly a year and to again get devastating news. It makes me sad. It adds to the fear that this may not work for us again. It brings the realization that I may never carry a baby again closer. It breaks my heart to know I may never feel little kicks again. It makes me regret not committing those last few kicks from Mckenna to memory a little more. All of those things flood my head as I consider the fact that we have now used 4 of our 6 embryos, and that we are running out of chances. It hurts.

Yesterday at church we had a guest singer, JJ Heller. She’s a Christian artist who is phenomenal. JJ Heller is a favorite of ours. I actually labored with Mckenna with her music on in the room, and Mckenna was born with it playing in the background. In the first weeks and months of Mckenna’s life I endlessly listened to and sang her song “I Get to be the One”…about the blessing of getting to be the one to raise your child. Yesterday she was at our church for the first time in years singing a song of hers I had never heard before called “Who You Are”. When she started singing, I started crying. The song starts, “all she wanted, was a baby to hold…” I lost it. Knowing my test was today, and knowing that God had her at our church yesterday, I knew this was a song for me. The song continues, “…she’s praying, ‘I don’t know, I don’t know what you’re doing, but I know who you are.”

There are no truer words. As the song says, “sometimes life doesn’t make any sense.” Sometimes we don’t understand our circumstances. Sometimes we wish we knew why. But I realized today, my job isn’t to know the why. I will never know some of the whys in my life. And that needs to be ok. The only thing I need to know is who my God is. And my God is ALWAYS good. The only thing I need to focus on in this situation is Romans 8:28:

“And we know that in all things God works for the good of those who love him, and who have been called according to his purpose.”

So while my mind wants to race to the why’s of the past, the pain of the present, and the possibilities of the future, I am choosing to still my thoughts and pray, “I don’t know what you’re doing, but I know who you are.”

As for our plans moving forward, we need a break before trying one last time with our remaining two embryos. I don’t know how long we will wait. I’m hoping sometime in the next months or year, there will be a time that just feels right.

But to end this blog on a lighter note,  I leave you with a break-up letter I’ve written to IVF:

Dear Invitro Fertilization –

We need to talk. Please know what I’m about to say is out of love, and it will probably hurt me more than it will hurt you, but it has to be said.

I need a break.

It’s not you, it’s me. We’ve been back together for 11 months, and well, we just aren’t working right now. And please hear me when I say it’s not you. You are great. I love and respect you. You are so good, and I’m constantly amazed by you. But we just aren’t good for each other right now. Over the last 11 months, you’ve driven me crazy. When we’re together, I’m always weepy, emotional, and snappy. And honestly, I need a break from all the drama you bring into my life.

And this isn’t a break up…but a break. I need some space for awhile. I love you. Afterall, we have one child together. Let’s take this time to improve ourselves. You get better at all that you do, and I will take this time to focus on me. I want to train for new things, lose some of this fluff you’ve helped me gain, and most of all, get back to my normal self mentally and emotionally.

This isn’t goodbye, it’s see you later…